"As experiências dos pais de recém nascidos prematuros de muito baixo peso em uma UTI Neonatal privada e a percepção em relação ao desenvolvimento neuropsicomotor pós alta de seus filhos"

Abstract

Introduction: Survival of preterm newborns (PTNB), defined as babies born with gestational age of less than 37 weeks, has increased considerably in recent years, reflecting advances in antenatal, labor and delivery, and neonatal care. Preterm birth and low birth weight are associated with higher neonatal morbidity and mortality, the chances of survival without significant dysfunction and / or deficiency decreases with gestational age. Reducing the possibility of sequelae is a great challenge in Neonatal Intensive Care Unit (NICU). Objectives: To describe the parents' perspectives regarding neuropsychomotor development of their children, very low birth weight preterm neonates, and to describe what helped them to overcome the neonatal hospitalization, as well as factors which may have difficult their daily routine after discharge. Methods: Sequential mixed method research, combining quantitative and qualitative approaches. Participants included parents of very low birth weight preterm infants discharged from NICU at Moinhos de Vento Hospital from 2007 to 2017. The quantitative evaluation was performed using a Qualtrics online questionnaire, based on the adapted Denver II Test. Parents were questioned about the age at which their children had reached developmental milestones in the social, language, fine motor, and gross motor fields. The qualitative research, to deepen the understanding about parents' perception, was carried out with face-to-face interview and semi-structured questionnaire. For data collection, prior contact was made with 8 families, with children born at different gestational ages (from 22 to 32 weeks). Upon accepting participation in the study, family members received the Informed Consent Term and answered the questionnaire in person. Results: Sixty-seven parents answered the online questionnaire. The analysis of the answers showed that according to gestational age, 73.7% of parents of extreme preterm infants perceived their children had adequate development. In the very preterm group, perception of normal development was 89.7%. When these perceptions were compared to questionnaire responses, 37% of the parents had a better perception than the findings in the social domain. Regarding language, 19.4% of them perceived development as inadequate, although answers in the questionnaire showed their children were considered to have normal achievements. Conclusion: Our data allows us to conclude that perception of parents regarding their children's neuropsychomotor development after hospital discharge is adequate. The qualitative study showed that hospitalization in the Neonatal ICU is considered by parents a very difficult period, that transformed their lives and their meanings, making them stronger and more confident to care for their premature babies.