Self-care deficits reported by school children with cystic fibrosis.

BACKGROUND: Self-care refers to the ability that an individual has or develops to regulate the functioning of the body. Health status and age are factors associated with dependency on, and the need for, someone else to take over self-care. In the present case, there was a self-care deficit. Cystic fibrosis is a chronic disease that occurs in one in 10,000 live births in Brazil, and the affected population in the country is predominantly pediatric (approximately 73%). Support from nursing teams is necessary to improve patients' skills until they can take full responsibility for their self-care. PURPOSE: This study aimed to identify self-care deficits based on reports from schoolchildren with cystic fibrosis. DESIGN AND METHOD: A qualitative study was conducted with eight Brazilian schoolchildren with cystic fibrosis, using an art-based technique during interviews. Minayo's thematic analysis was used for data analysis and interpretation. RESULTS: These results emerged from Orem's theory of self-care deficits and needs. A main theme labeled as universal self-care requisites was identified, and three subthemes were derived-maintenance of an adequate air supply; maintenance of a balance between activity and rest; and avoiding risks to life, bodily functions, and well-being. CONCLUSION: Schoolchildren living with cystic fibrosis have a negative attitude toward their disease, which makes it difficult for them to acquire the ability to care for themselves with greater autonomy. This leads to deficits in the self-care delivered by providers. IMPLICATIONS TO PRACTICE: It is necessary to recognize the deficits in self-care and the extent to which children living with cystic fibrosis depend on self-care providers. Families must be aware of these self-care deficits to develop holistic self-care abilities.

A estrutura da rede social da mãe/acompanhante da criança hospitalizada* / Structure of the social network of mothers/caregivers of hospitalized children / Estructura de la red social de la madre/acompañante del niño hospitalizado

Objetivo: Analisar a estrutura da rede social da mãe/acompanhante durante a hospitalização da criança. Método: pesquisa qualitativa, em hospital pediátrico do Rio de Janeiro. Foram entrevistadas dez mães/ acompanhantes de fevereiro a dezembro de 2015. Utilizou-se o referencial teórico-metodológico e a análise de rede social de Lia Sanicola. Resultados: as redes primárias configuraram-se de tamanho médio e laços fortes, principalmente as redes das crianças que estão na primeira hospitalização, pois se mostraram mais numerosas comparadas com aquelas que já tiveram outras hospitalizações. Das redes secundárias, foram mencionadas: redes formal, terceiro setor e mercado. Não foram citadas as redes mista e informal. Conclusão: hospitalizações prolongadas e frequentes da criança interferem na dinâmica da rede social, tendo em vista que, ao longo das hospitalizações, ela se torna menor, porém com laços mais fortalecidos. A rede de atenção primária não foi mencionada e é justificada através do diagnóstico de doença crônica desde o nascimento (AU).

Objective: Analyze the structure of the social network of mothers/caregivers during the hospitalization of their child. Method: Qualitative study in a pediatric hospital in Rio de Janeiro. Ten mothers/caregivers were interviewed from February to December 2015. A theoretical-methodological framework and social network analysis by Lia Sanicola were used. Results: The primary networks were medium-sized, with strong bonds, particularly the networks for children being hospitalized for the first time. They were more numerous than those for children who had been previously hospitalized. The following secondary networks were mentioned: formal, third sector and market. No mixed and informal networks were mentioned. Conclusion: Extended and frequent hospital stays of children affect the dynamics of social networks. Over the course of hospital stays, they become smaller, but the bonds within them are strengthened. The primary healthcare network was not mentioned, due to the fact that the children had been diagnosed with chronic diseases since birth (AU).

Objetivo: Analizar la estructura de la red social de la madre/acompañante durante la hospitalización del niño. Método: Investigación cualitativa, en hospital pediátrico de Rio de Janeiro. Fueron entrevistadas diez madres/acompañantes, entre febrero y diciembre de 2015. Se utilizó referencial teórico-metodológico y análisis de red social de Lia Sanicola. Resultados: Las redes primarias expresaron dimensión mediana y lazos fuertes, particularmente las redes de niños en su primera hospitalización, mostrándose más numerosas comparadas con las de niños previamente hospitalizados. De las redes secundarias, fueron mencionadas: red formal, tercer sector y mercado. No fueron citadas la red mixta y la informal. Conclusión: Las hospitalizaciones prolongadas y frecuentes del niño interfieren en la dinámica de la red social, considerando que, a lo largo de las hospitalizaciones, se hace menor, aunque con lazos más fortalecidos. La red de atención primaria no fue mencionada, justificándose por el diagnóstico de enfermedad crónica desde el nacimiento (AU).

Family caregivers articulating the social network of a child with special health care needs.

UNLABELLED: In Brazil, studies rarely address the social network of a child with special health care needs (CSHCN). OBJECTIVE: the study sought to characterize the social network of the child and analyze the role of the family in its creation. METHOD: a qualitative approach was developed through five dynamics (Speaking Map) based on the creative sensitive method, with five groups of families (12 participants) in their homes. RESULTS: the critical discourse analysis of the caregivers (grandparents, siblings and neighbors) showed that the mother plays the main role in articulating the social network, with its points being linked by the hospital, primary and rehabilitation care, household, school, etc. Familial care becomes more visible at home and within the community. CONCLUSION: with the insufficient public policy that articulating healthcare facilities for CSHCN in the community, family members shape a social network characterized by a dense and fluid mesh.