RESUMO
PURPOSE: Intermittent catheterization (IC) often is essential for individuals with spina bifida/myelomeningocele (SBM) and neurogenic bladder. This study aimed to identify and analyze the factors that influence the use of IC. DESIGN AND METHODS: Descriptive study with convenience sampling. Data were collected using printed (Brazil) and online (Germany) questionnaires, and analyzed using multivariate logistical regression and analysis of variance. The study included 100 Brazilian and 100 German patients, aged 0-55 years, with SBM who utilized IC. FINDINGS: Intermittent catheterization was used by 188 of the 200 patients. Three variables were important for predicting who did or did not use IC: no discontinuation of IC, absence of technical difficulty, and daily frequency of IC. CONCLUSIONS AND CLINICAL RELEVANCE: Findings suggest that difficulties with IC use experienced by spina bifida patients and their family members that predicted full discontinuation tended to be personal variables, rather than demographic or medical characteristics.
Assuntos
Cateterismo Uretral Intermitente/estatística & dados numéricos , Disrafismo Espinal/terapia , Adolescente , Adulto , Brasil , Criança , Pré-Escolar , Feminino , Alemanha , Humanos , Lactente , Cateterismo Uretral Intermitente/psicologia , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Enfermagem em Reabilitação/métodos , Disrafismo Espinal/enfermagem , Disrafismo Espinal/psicologia , Inquéritos e Questionários , Bexiga Urinaria Neurogênica/enfermagem , Bexiga Urinaria Neurogênica/terapiaRESUMO
A major complication for individuals with spina bifida (SB) is managing their neurogenic bladder. For many, this process evokes negative feelings associated with guilt, dependence, and lack of self-worth. PURPOSE: The aim of the study was to compare feelings that hinder the performing of intermittent bladder catheterization reported by individuals with SB and their families in two countries of different sociocultural characteristics: Brazil and Germany. DESIGN AND METHODS: Quantitative and comparative study with convenience sampling. The sample comprised 200 SB patients and their caregivers, 100 from Brazil and 100 from Germany. FINDINGS: When asked about the existence of negative feelings or ideas that may hinder the performance of key person responsible for IC, 155 (77.5%) participants did not report such feelings. On the other hand, 45 (22.5%) reported emotional difficulties; among these participants, 31 (69%) were Brazilians and 14 (31%) were Germans. CONCLUSIONS AND CLINICAL RELEVANCE: Although emotional factors are important to the adjustment of using IC methods for bladder management, the majority of people with SB and their caregivers seem to report no major emotional difficulties with this process. Yet a considerable group of participants did report such emotional difficulties associated with fear and shame. Knowing more about the factors associated with such negative feelings can facilitate interactions, provide mutual aid, and assist with resolution of practical concerns related to intermittent bladder catheterization.
Assuntos
Cuidadores/psicologia , Cateterismo Uretral Intermitente/normas , Disrafismo Espinal/psicologia , Bexiga Urinaria Neurogênica/terapia , Adolescente , Adulto , Brasil , Criança , Pré-Escolar , Medo/psicologia , Feminino , Alemanha , Humanos , Lactente , Cateterismo Uretral Intermitente/psicologia , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Vergonha , Disrafismo Espinal/enfermagem , Estatísticas não Paramétricas , Bexiga Urinaria Neurogênica/psicologiaRESUMO
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.
Assuntos
Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Reabilitação , Meningomielocele/enfermagem , Serviços de Saúde do Adolescente , Crianças com Deficiência/reabilitação , Enfermeiros Especialistas , Autocuidado , Anormalidades Congênitas/enfermagem , Cateterismo/enfermagem , Família , Disrafismo Espinal/enfermagem , Padrões de Prática em Enfermagem , Hospitais de Reabilitação , Locomoção , Doenças e Anormalidades Congênitas, Hereditárias e Neonatais , Enfermeiras e Enfermeiros/normasRESUMO
BACKGROUND: Most parents would agree that the admission of an infant to the neonatal intensive care unit (NICU) is stressful. Existing research is focused on white mothers, with little known about the experiences of Spanish-speaking, Mexican American mothers who have an infant in the NICU. PURPOSE: The purpose of this qualitative case study was to describe the experiences of a Spanish-speaking, Mexican American mother whose infant had been in the NICU. METHODS: Qualitative description was used to conduct this study. One Spanish-speaking, Mexican American mother who had an infant in the NICU was recruited through purposive sampling. An in-depth interview was conducted, audio-recorded, and transcribed verbatim. Conventional content analysis was used to analyze the data. FINDINGS: Analysis of the data revealed that the experience of a Spanish-speaking, Mexican American mother who had an infant in the NICU was one of uncertainty, involvement, trust, and anticipating discrimination.