Abstract

Sylvia Maria Porto Pereira, Maria Helena Cabral de Almeida Cardoso

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 familiesneonates’ 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.