A organização familiar para o cuidado à criança em condição crônica egressa da unidade de terapia intensiva neonatal

Abstract

The child coming from the neonatal intensive care unit, who has chronic health condition, requires accompaniment during infancy and needs special care that are held by the family in conjunction with the social network. We presuppose that family support is one which ensures, in the first instance, integrality and continuity of care and it is not known, in a systematic way, how care practices take place in relation to chronic condition and how the family organizes itself to this. Given this, the general objective of this work is to analyze the family organization to take care of the child in chronic condition who is coming from the neonatal intensive care unit. The specific objectives are to study the implications in the family dynamics because of taking care of a child in chronic condition and to point out challenges determined by chronic condition to caregivers. The study is qualitative and was guided by theoretical approach of dialectics. The study subjects were 12 families of children discharged from NICU of Sofia Feldman Hospital with a chronic health condition and the setting was the home of these children. Data collection was divided into three phases. Phase I, conducted from documentary analysis of medical records of children discharged from the NICU, when the children were identified. The data collection of phase II occurred through the application of QuICCC-R (Questionnaire for Identifying Children with Chronic Conditions - Revised) and phase III consisted of the construction of the genogram and eco-map and interview based on the Theoretical Model Management Family StyleFramework-FMSF with the families of the children included in the study. The field diary was used as an instrument to records of the researcher. Data analysis was performed according to the technique of Content Analysis proposed by Bardin (2008). From the speeches, were revealed the following categories: (1) The arrival of a child: pregnancy, birth and early care; (2) knowledge of the chronic condition and understanding of the family about the child and the need of differentiated care; (3) The children with chronic conditions care: implications for family life after discharge and the organization of family to take care; (4) The children with chronic conditions care: challenges determined by the condition and the coping strategies of the family. From the study, it was possible to understand some aspects of pregnancy, childbirth and early care that children demanded shortly after birth. Still, the feelings involved when the family became aware that the child had some change. The hospital discharge, despite being desired, was permeated by fear and insecurity. The intensity of care demanded shortly after hospital discharge until these days was evidenced. Care pointed determined changes in family dynamics by imposing certain mode of organization. In order to achieve the demanded care, family accesses its social network. Moreover, were made explicit the challenges imposed by the care and the strategies employed by the families to overcome them. Being the family members the caregivers, it becomes necessary to pay attention to the families, who also need care, s