Experiences of two Brazilian families with the birth of premature extremely low-birth-weight infants up to five years of age: Use of narratives

Abstract

This study was carried out to know about the experiences of two Brazilian families with the birth of extremely 
premature infants up to five years of age. Participant observation and open interview were used as qualitative 
methodology. Tertiary teaching hospital, residences, schools and churches families attended. Fathers and 
mothers of two extremely premature infants assisted to Neonatal Unit, January/December 2001. There were 
21 meetings, 14 for observation (30 hours, 90 field diary’s pages); seven for interviews (eight hours, 117 
pages transcribed) . The analysis is by semiotic model. This report is presented as two narratives. Four great 
themes were identified by narratives: healthcare, parents’ stress, communication and support network. 
Gestational hypertension was a risk factor for extreme prematurity, prolonged neonatal care and families
neonates’ separation; mothers’ assistance at delivery room and first entry in Neonatal Unit had disrespected 
humanized care; parents’ stress was present at delivery room, first sight of the newborn at Neonatal Unit, at 
home, as child’s caregivers, with child©s morbidity, fear of death has always been present; communication 
was both positive and negative; nuclear/extended families, friends, health team and religion were the social support network’s elements. The narrative brought to debate relevant issues.