Juliana Rezende Montenegro Medeiros de Moraes

The social network of children with special healthcare needs in the (in)visibility of nursing care

This study aimed to identify the (in)visibility of nursing care and discuss ways of (dis)articulating this care with family care in the social network of children with special healthcare needs. A qualitative research was performed with health professionals at a pediatric hospital, four units of the Family Medical Program (FMP), and childrens relatives living in Niterói (RJ). The field work was put in practice after IRB approval (HESFA/EEAN), consisting of five semi-structured interviews and two group dynamics. Critical Discourse Analysis indicated that nursing care is visible in the childs social network through the nurses educational and care activities and home visits by the nurisng aide of the FMP. Due to errors in the national health systems referral and counter-referral, mothers articulate the network and not the health service; thus, the reorganization of the system in the State would foster social networks that are less wearing for their families.

A criança egressa da terapia intensiva na luta pela sobrevida

Pediatric intensive care units have significantly reduced childhood morbidity and mortality, and have generated a group of children with special care needs. The common sense family care they receive at home however has not been trained to attend to them, interfering in their quality of life and causing frequent returns to hospital. To know about discharge from intensive care is to go beyond survival and to also offer a better quality of life. To this end we developed an epidemiological method in two public health care facilities in Rio de Janeiro, to investigate the time and number of hospitalizations and type and quantity of diagnosis between 1994-1999, with children aged from 29 days to 12 years. The results show that 6.3% (85) of 1355 hospitalized children were considered with special care needs, with 9 hospitalizations of up to 60 days. To each hospitalization can be added one or two basic diagnoses revealing chronic conditions.Las TIPs han reducido significativamente la morbimortandad infantil y han generado un grupo de ninos que necesitan cuidados especiales. Sin embargo, en el domicilio reciben los cuidados de los familiares, cuyo sentido comun no ha sido formado para atenderlos, interfiriendo en su calidad de vida y en los frecuentes reingresos al hospital. Conocer al egreso de la terapia intensiva es ir mas alla del sobrevivir, es ofrecer tambien mejor calidad de vida. En este sentido, hemos desarrollado el metodo epidemiologico, investigando en dos instituciones publicas en Rio de Janeiro el tiempo y numero de ingresados, el tipo y cantidad de diagnostico, entre 1994 y 1999 con los ninos que estaban entre los 29 dias de vida hasta los 12 anos. Los resultados senalan que el 6,3% (85) de los 1355 ninos internados tenian necesidades especiales. Habian reingresado hasta 09 veces, consumiendo asi, hasta 60 dias de sus vidas. En cada nuevo reingreso se sumaban uno o dos diagnosticos mas, al primero que se habia dado, con lo cual queda evidente la cronicidad del estado del nino.

A rede social de crianças com necessidades especiais de saúde na (in)visibilidade do cuidado de enfermagem

This study aimed to identify the (in)visibility of nursing care and discuss ways of (dis)articulating this care with family care in the social network of children with special healthcare needs. A qualitative research was performed with health professionals at a pediatric hospital, four units of the Family Medical Program (FMP), and childrens relatives living in Niterói (RJ). The field work was put in practice after IRB approval (HESFA/EEAN), consisting of five semi-structured interviews and two group dynamics. Critical Discourse Analysis indicated that nursing care is visible in the childs social network through the nurses educational and care activities and home visits by the nurisng aide of the FMP. Due to errors in the national health systems referral and counter-referral, mothers articulate the network and not the health service; thus, the reorganization of the system in the State would foster social networks that are less wearing for their families.

O cuidar de crianças egressas da unidade de terapia intensiva neonatal no espaço domiciliar: instrumentos mediadores das famílias

1 Recorte da dissertação de mestrado “O diálogo da enfermagem com as famílias de crianças egressas da terapia intensiva neonatal: desvendando o universo temático” defendida em 13 de março de 2003, na Escola de Enfermagem Anna Nery (EEAN) da UFRJ. 2 Mestre em Enfermagem Pediátrica pela EEAN/UFRJ.Enfermeira do Hospital Municipal Getúlio Vargas FilhoNiteróiRJ. 3 Doutora em Enfermagem. Professora Adjunto do Departamento Materno-Infantil da EEAN/UFRJ. Pesquisadora do CNPq.

Familiares cuidadores articulando rede social de criança com necessidades especiais de saúde

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.

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.

ENCONTRO EDUCATIVO DA ENFERMAGEM E DA FAMÍLIA DE CRIANÇAS COM NECESSIDADES ESPECIAIS DE SAÚDE

Objective: to know the doubts of the relatives of children with special health care needs regarding home care related to technological devices; and to analyze the use of the conversation circle as a strategy of health education in the preparation for the hospital discharge of the relatives of children with technological devices. Method: descriptive and exploratory research, with a qualitative approach, performed in the pediatric hospitalization sector of a federal hospital in Rio de Janeiro between May and June 2014. Six family members participated in semi-structured interviews and conversation circles. The data were submitted to thematic analysis. Results: the relatives highlighted doubts in the learning and adaptation to the technology during the transition from the hospital to the home environment, and in possible emergency situations after the hospital discharge. These doubts were mainly about procedural care with tracheostomy and gastrostomy. However, the strategy of the conversation circle with the use of a doll with technological devices coupled was well-accepted by the relatives, as it favored the dialogue and the exchange of knowledge and experiences among the participants, as well as promoting safety in care. Conclusion: the conversation circle is a strategy of health education that can be used by Nursing in the preparation of the hospital discharge of children with special health care needs, who are dependent on technology. However, this preparation must happen procedurally during the hospitalization

Empowerment of the mothers of children in a pediatric intensive care unit

OBJECTIVE to analyze the process of empowerment of the mothers of children hospitalized in a pediatric intensive care unit (PICU) according to Cheryl H. Gibsons framework. METHOD a qualitative study with a non-directive interview in groups was carried out with 14 mothers in the PICU of a pediatric teaching hospital in the state of Rio de Janeiro, whose data were submitted to thematic analysis. RESULTS all mothers underwent at least one phase of the process of empowerment. Some of them achieved the phase of participatory competence in the care for their children, being heard by the team and expressing their needs, opinions, and questions. Final considerations: attentive listening and information sharing with mothers is necessary, in order to provide essential support so that they undergo the process of empowerment, thus involving themselves in care and decision-making regarding their children.

Theoretical saturation in qualitative research: an experience report in interview with schoolchildren

OBJECTIVE report the experience of applying the theoretical data saturation technique in qualitative research with schoolchildren. METHOD critical reading of primary sources and compilation of raw data, followed by thematic grouping through colorimetric codification and allocation of themes/types of statements in charts to find theoretical saturation for each grouping. RESULTS colorimetric codification occurred according to previously established themes: bodily hydration; physical activities and play; handling of sickle-cell disease; feeding and clothing. On the eleventh interview, it was possible to reach the theoretical saturation of themes, with four additional interviews being performed. CONCLUSION this experience report enabled the description of the five sequential steps for identification of theoretical data saturation in qualitative research conducted with schoolchildren.

Translation and cultural adaptation of data collection instruments on gender construction in childhood

Gender studies on childhood imply the use of tools that, if elaborated in another country, they need to be translated and culturally adapted to Brazilian Portuguese. Objectives: To translate and adapt Cuban Spanish versions of the Encuesta de constatación y reflexión del sexismo en el ámbito escolar, and the Cuestionário auto-administrado de constatación y reflexión del sexismo en el ámbito escolar. Method: A qualitative and methodological study was developed with 37 experts (15 teachers of elementary school and 22 healthcare professionals on child health) from the Brazilian cities (Rio de Janeiro, Macaé, Itajaí, Porto Alegre) and Cuban (Habana). Results: Nine original questions of original tools were modified and adapted to the language, culture and elementary Brazilian education system. It was necessary to split the first tool into two separate parts (classroom and break) for facilitating its application by observers. Conclusion: Changes improved the deepness, consistency of observations among observers and introduced more specificity to final versions of tools for further applications on nursing and education studies.