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

Abstract

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 children's 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 child's social network through the nurse's educational and care activities and home visits by the nurisng aide of the FMP. Due to errors in the national health system's 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. La red social de niños con necesidades especiales de salud en la (in) visibilidad del cuidar de enfermeríaEl objetivo fue identificar la (in) visibilidad del cuidado de enfermería y discutir los modos de (des) articulación de ese cuidado con el cuidado familiar en red social de niños con necesidades especiales de salud. Investigación cualitativa con profesionales de salud de un hospital pediátrico, de cuatro unidades del Programa Médico de Familia (PMF), y familiares residentes en Niterói (RJ). Trabajo de campo fue ejecutado después de aprobación por el Comité de Ética (HESFA/EEAN), consistiendo de cinco entrevistas seme-estructuradas y dos dinámicas grupales. Análisis Critica del Discurso apuntó que cuidado de enfermería es visible en red social del niño por actividades cuidadoras y educativas de enfermera y por visita domiciliar del auxiliar de enfermería del PSF. Debido a fallos en la referencia y contra referencia del sistema de salud, la madre, articula red y no servicio de salud; por tanto la reorganización del sistema en el Estado promovería redes sociales menos desgastantes para familiares. MethodsThis qualitative and descriptive research was developed through the creative and sensitive method (8)(9) in three contexts: a pediatric public hospital (G. Two criteria were used to close off the field work (10) .)The first, concerning internal validity, sought theoretical saturation; and the second, for the sake of external validity, referred to the number of participants in the preceding qualitative studies, to determine the minimum of six and maximum of 12 participants.Data were analyzed through Critical Discourse Analysis (11) , as they entailed discourse markers that reflected power relations, the dominant ideology and the macro-structural context, influencing the constitution of the research participants' statements. Based on Fairclough's (11) three-dimensional analysis framework, textual, discourse practice and social practice analyses were performed.The discourse practice dimension centers on how discourse is produced in particular ways and in sp...

Discursos sobre cuidados na alta de crianças com necessidades especiais de saúde

“…In this sense, the substitution of daily and routine care practices directly depend on learning new care practices that come from the nursing field, thus requiring action from nurses when counseling/teaching families, since this action is an integral part of nursing care (12,(16)(17) .…”

“…Nursing practice is closely related to preparing family caregivers for discharge so they learn how to care for their children at home, focusing on care that will substitute or modify daily and routine care practices previously performed by families and incorporated throughout their lives (10,(16)(17) .…”

“…The professional knowledge of hospital nursing is transmitted to be reproduced at home, according to scientific principles and techniques perfectly justifiable for the hospital environment, with no question as to their pertinence and applicability in the home context. The essence of care is focused on the pathology, in mastering techniques and on the acquisition of motor skills so that all procedures are performed safely (16)(17) .…”

“…Therefore, this educational process has no context, being based upon content transmission and technique reproduction, with no critical reflection on the possibility of maintenance of this care after discharge (16)(17) . It is expected that family caregivers reproduce at home what they learned at the hospital, with little value given to their knowledge and experience with their CSHN on the social-family context (2,18) .…”

Strengths and Weaknesses of Primary Child Health Care Models: An Integrative Review

“…From the perspective of comprehensiveness in health care of the child, despite the obligation of the health teams in PHC to provide strategies and actions for the promotion, protection and accompaniment of children with special health care needs, this group of children remains invisible to health services and their models of care [28][29]. However, the FHS is a potential PHC space for caring for children with alterations and/or deficiencies in growth [30].…”