Objective: To know how children with special health needs access the health care network. Method: This is a qualitative research of descriptive-exploratory type, developed using semi-structured interviews mediated by the Talking Map design. Participants were 19 family caregivers of these children in two Brazilian municipalities. Data were submitted to inductive thematic analysis. Results: Difficulties were mentioned from the diagnosis moment to the specialized follow-up, something represented by the itinerary of the c hild and his/her family in the search for the definition of the medical diagnosis and the access to a specialized professional; a gap between the children's needs and the care offered was observed in primary health care. Conclusion: The access of children with special health needs is filled with obstacles such as slowness in the process of defining the child's diagnosis and referral to a specialist. Primary health care services were replaced by care in emergency care units. Descritores: Criança; Acesso aos Serviços de Saúde; Cuidadores; Doença Crônica; Enfermagem Pediátrica. RESUMOObjetivo: Conhecer como se dá o acesso de crianças com necessidades especiais de saúde na rede de atenção à saúde. Método: Pesquisa qualitativa do tipo descritivo-exploratória, desenvolvida por meio de entrevistas semiestruturadas mediadas pelo desenho do Mapa Falante. Participaram 19 familiares cuidadores dessas crianças em dois municípios brasileiros. Os dados foram submetidos à análise temática indutiva. Resultados: Apontou-se dificuldades, do diagnóstico ao acompanhamento especializado, algo denotado pelo itinerário da criança e sua família na busca pela definição do diagnóstico médico e pelo acesso ao profissional especializado; no atendimento na atenção primária à saúde, observou-se um distanciamento entre as necessidades das crianças e a assistência ofertada. Conclusão: O acesso de crianças com necessidades especiais de saúde apresenta-se permeado por obstáculos, como a morosidade no processo de definição diagnóstica da criança e o encaminhamento para o especialista. Houve substituição dos serviços da atenção primária pelos atendimentos em unidades de pronto-atendimento. Descritores: Criança; Acesso aos Serviços de Saúde; Cuidadores; Doença Crônica; Enfermagem Pediátrica. RESUMENObjetivo: Conocer cómo ocurre el acceso de niños con necesidades especiales de salud a la red de atención primaria a la salud. Método: Investigación cualitativa, de tipo descriptiva y exploratoria, en la cual se utilizó entrevistas semiestructuradas mediadas por la elaboración de un Mapa hablante. Participaron 19 familiares que cuidan a estos niños en dos municipios brasileños. Se sometieron los datos al análisis temático inductivo. Resultados: Del diagnóstico al acompañamiento especializado, se apuntaron dificultades durante la trayectoria del niño y su familia por la búsqueda de la definición del diagnóstico médico y del acceso al profesional especializado; en la atención en la red de atención primaria a la salud, se observó un distanciami...
Objective: to identify the professionals' perception regarding family-centered care. Methods: this is a crosssectional descriptive study with 60 professionals from a pediatric intensive care unit. The Brazilian Family-Centered Care Perception instrument was applied. Data were analyzed using descriptive and analytical statistics, Student's t-test and Mann-Whitney test were used to compare variables. Results: the mean of the familycentered perception of care was 2.93 (±0.27), the median of 2.90, a maximum score of 3.50 and minimum of 2.30. Most professionals (60.0%) considered that family-centered care is sometimes practiced. The mean scores did not have statistically significant differences between the characterization variables of the team. Conclusion: perception of care distant from the recommendations of an extended care that aggregate the child and his family. Descriptors: Pediatric Nursing; Child; Family; Critical Care. Objetivo: identificar a percepção dos profissionais com relação ao cuidado centrado na família. Métodos: estudo descritivo transversal com 60 profissionais de uma unidade de terapia intensiva pediátrica e aplicou-se o instrumento Percepção do Cuidado Centrado na Família-Equipe versão brasileira. Os dados foram analisados a partir da estatística descritiva e analítica, utilizou-se o teste t-Student e o teste de Mann-Whitney para comparação entre as variáveis. Resultados: a média do escore de percepção do cuidado centrado na família foi 2,93 (±0,27), mediana de 2,90, escore máximo de 3,50 e mínimo de 2,30. A maioria dos profissionais (60,0%) considerou que o cuidado centrado na família às vezes é praticado. Os escores médios não apresentaram diferenças estatisticamente significantes entre as variáveis de caracterização da equipe. Conclusão: percepção de cuidado distante das recomendações de um cuidado ampliado que agrega a criança e sua família.
Objective: to understand the experience of mothers of technology-dependent children as regards pharmaceutical care. Method: this was a qualitative, descriptive-exploratory study developed based on open interviews using a structured characterization tool, and applied during home visits to 12 mothers caring for technology-dependent children. The data was submitted to inductive content analysis. Results: this study is split into two themes: (i) maternal overload during pharmaceutical care, demonstrating the need to administer drugs continuously and the repercussions of this exhaustive care on the caregivers; (ii) the ease or diffi culty of access to the medicines required, showing informal strategies and support networks. Conclusion: pharmaceutical care is a daily challenge expressed in maternal overload and diffi culty accessing the drugs, made worse by failures in the care network and coordinated care. Descriptors: Pediatric Nursing; Caregivers; Child; Chronic Disease; Family. RESUMO Objetivo: compreender a vivência de mães de crianças dependentes de tecnologia em relação ao cuidado medicamentoso. Método: pesquisa qualitativa do tipo descritivo-exploratória, desenvolvida por meio de entrevistas abertas e aplicação de instrumento estruturado para caracterização, com 12 mães cuidadoras de crianças dependentes de tecnologia durante visita domiciliar. Os dados foram submetidos à análise de conteúdo indutiva. Resultados: organizados em dois temas: a sobrecarga materna diante do cuidado medicamentoso, que revelou a necessidade da administração de medicamentos de forma contínua e as repercussões desse cuidado exaustivo para as cuidadoras; e as difi culdades e facilidades no acesso aos medicamentos, apontando as estratégias informais e redes de apoio. Conclusão: o cuidado medicamentoso confi gura-se um desafi o diário expresso pela sobrecarga materna e difi culdade de acesso aos medicamentos, potencializado por falhas na constituição da rede de atenção e coordenação do cuidado. Descritores: Enfermagem Pediátrica; Cuidadores; Criança; Doença Crônica; Família. RESUMEN Objetivo: comprender la experiencia de las madres de niños dependientes de la tecnología para la atención médica. Método: estudio cualitativo de tipo descriptivo exploratorio desarrollado a través de entrevistas abiertas y aplicación de instrumento estructurado para la caracterización, con 12 madres cuidadoras de niños que dependen de la tecnología durante las visitas a domicilio. Los datos fueron sometidos a análisis de contenido inductivo. Resultados: organizados en dos temas: la sobrecarga de la madre en relación a la atención médica, que reveló la necesidad de una administración continua del medicamento y las repercusiones de esta atención agotadora para las cuidadoras; y las difi cultades y facilidades de acceso a los medicamentos, señalando las estrategias informales y Rev Bras Enferm [Internet]. 2016 jul-ago;69(4):671-7. 672Technology-dependent children and the demand for pharmaceutical care Okido ACC, et al.
Objective: To describe the family dynamics and the social support network for families of children with special needs of multiple, complex and continuous care. Methods: A descriptive study of a qualitative approach, carried out in Maringá - PR, having as theoretical and methodological reference the Calgary Model of Family Assessment (CMFA). Data was collected through semi-structured audio-video interviews, carried out in the homes, together with 11 family caregivers of 13 children. Results: Data is presented in the following categories: structural, developmental and functional evaluation, which show the changes in the family routine and the needs for the adjustment of the roles of its members, in order to better implement the care at home. Conclusions: Using the CMFA made it possible to identify and understand the composition, fragilities and potentialities of the family, as well as the relationships among its members and rearrangements to better enable care at home. This information favors interventions congruent with the needs of these families.
OBJECTIVE: to understand the experience of care delivery to technology dependent children based on the mothers' experience. METHOD: exploratory study with qualitative approach, based on the theoretical framework of medical anthropology and the narrative method. Twelve mothers participated and, as the technique to obtain the narratives, open interviews were held at the participants' homes. RESULTS: the narratives were organized into three thematic categories: the family system, identifying the care forms, the association between popular and scientific knowledge and the participation of the social network; the professional system, which discusses the relations between professionals and family, the hegemony of the biomedical model and the role of nursing; and the popular system, presenting popular care practices like spirituality and religiosity. CONCLUSION: the study provided support for a health care project that takes into account the families' moral and symbolic values and beliefs in view of the illness of a technology-dependent child. The results found can contribute towards changes in the health work process, so that its foundation is guided not only by the biomedical model, allowing the integration of the sociocultural dimensions into the health care movement.
RESUMOEste estudo tem como obje vo compreender a experiência materna no cuidado ao fi lho dependente de tecnologia. U lizamos a abordagem do estudo de caso etnográfi -co tendo como instrumentos de coleta de dados os genograma e ecomapa, entrevista aberta e observação. Os dados foram organizados em três unidades de signifi cados: a busca pelas causas e por culpados; a alta hospitalar e as demandas para o cuidado e as redes de apoio. O estudo permi u conhecer a experiência materna em busca por explicações, bem como os sen mentos de desconfi ança, insegurança e insasfação relacionados ao serviço de saúde. Ainda a apropriação da mãe em relação aos cuidados à criança e no que se refere à organização do ambiente domiciliar para recebê-la, a u lização das redes de apoio, destacando a carência de vínculos com familiares e vizinhos e a busca formal e informal para garan r a subsistência da criança doente e dos demais fi lhos. DESCRITORES Criança Doença crônica Família Enfermagem pediátrica Cuidados de enfermagem ABSTRACTThe objec ve of this study is to understand the maternal experience of caring for a technology-dependent child. We used the ethnographic case study approach, as well as the genogram, ecomap, open interview and observa on methods as data collec on instruments. The data were organized into three meaning units: the search for causes and culprits; hospital discharge and the demand for care; and the support networks. The study allowed for an understanding of the mother's experience of searching for explana ons, as well as feelings of distrust, insecurity and dissa sfac on towards the health service provided. In addi on, the mother's organiza on regarding the child's care and in terms of readying the home environment to receive the child, the use of support networks, and par cularly the need for a achment with family and neighbors and the formal and informal search to assure the subsistence of her ill child as well as her other children were explored. DESCRIPTORS RESUMENSe obje va comprender la experiencia materna de cuidado al hijo adicto a la tecnología. U lizamos el abordaje de estudio de caso etnográfi co, u lizando como instrumento de colecta de datos el genograma y el ecomapa, entrevista abierta y observación. Datos organizados en tres unidades de signifi cación: búsqueda de causas y culpables; alta hospitalaria, y solicitudes de atención y redes de apoyo. El estudio permi ó conocer la experiencia materna en búsqueda de explicaciones, así como los sen mientos de desconfi anza, inseguridad e insa sfacción relacionados al servicio de salud. También la apropiación maternal rela va al cuidado del niño y en lo referente a la organización del ambiente domiciliario para recibirlo, la u lización de redes de apoyo, destacando la carencia de vínculos con familiares y vecinos y la búsqueda formal e informal para garan zar la subsistencia del niño enfermo y de los demás hijos. DESCRIPTORES
Objective:To identify the factors associated with involuntary hospital admissions of technology-dependent children, in the municipality of Ribeirão Preto, São Paulo State, Brazil. Method: A cross-sectional study, with a quantitative approach. After an active search, 124 children who qualified under the inclusion criteria, that is to say, children from birth to age 12, were identified. Data was collected in home visits to mothers or the people responsible for the children, through the application of a questionnaire. Analysis of the data followed the assumptions of the Generalized Linear Models technique. Results: 102 technology-dependent children aged between 6 months and 12 years participated in the study, of whom 57% were male. The average number of involuntary hospital admissions in the previous year among the children studied was 0.71 (±1.29). In the final model the following variables were significantly associated with the outcome: age (OR=0.991; CI95%=0.985-0.997), and the number of devices (OR=0.387; CI95%=0.219-0.684), which were characterized as factors of protection and quantity of medications (OR=1.532; CI95%=1.297-1.810), representing a risk factor for involuntary hospital admissions in technology-dependent children. Conclusion: The results constitute input data for consideration of the process of care for technology-dependent children by supplying an explanatory model for involuntary hospital admissions for this client group. DESCRIPTORSChild; Hospitalization; Pediatric Nursing. Factors associated with involuntary hospital admissions in technology-dependent childrenFatores associados às internações não eletivas em crianças dependentes de tecnologia Factores asociados con las hospitalizaciones no electivas en niños dependientes de tecnología
Objective to analyze the contributions of the in situ simulation in the self-confidence of early childhood and elementary education teachers regarding the initial management of health complications in school.Method this is a pre-post testing quasi-experimental study. Two pre and post in situ simulation instruments were applied to 76 teachers, namely: visual analogue scale of teachers’ self-confidence in the management of health complications at school, and a questionnaire to assess their knowledge on the subject. The educational activity was composed of four scenarios of in situ simulation. The data were analyzed by descriptive and analytical statistics using univariate and multivariate linear regression.Results the comparison of results of pre and post in situ simulation self-confidence identified promotion of self-confidence (p<0.001), especially for those teachers with less professional experience (p=0.008), without previous similar experience (p=0.003) and who actively participated in the simulation (p=0.009).Conclusion the teachers feel uncomfortable to handle health complications. The in situ simulation elevated the perception of self-confidence among teachers.
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