Parenting roles and knowledge in neonatal intensive care units (2012-2015)
Children born very prematurely (between 22 and 31 weeks of gestation) are very small, and dependent on intensive care. Outcomes of very preterm infants concerning survival rates, mortality and neurological and respiratory morbidity differ between neonatal intensive care units (NICU) and European regions, according to varied uses of medical interventions and several approaches to the organization of care. The development of treatments for effective perinatal intensive care needs the translation of scientific and medical knowledge into evidence-based practice, as well as the understanding of the parents views and knowledge on perinatal care in NICU.
By focusing the specific case of parents experiences in NICU, this research project is concerned with the societal, ethical and practical impacts of medicine and technology in society. Its design is complementary to the ongoing research conducted by EPICE (Effective Perinatal Intensive Care in Europe) in the Portuguese Northern region, leader by Professor Henrique Barros.The study will serve as foundation for a set of integrated insights related to the perspectives of parents of children born very prematurely on strategies to manage their roles and knowledge in a high-tech socio-medical environment. The central question guiding this study is the following one: what is the repertoire of meanings, knowledge, and emotions actualised by the parents of very preterm infants hospitalized in NICU in the decision process regarding parental care (namely in the fields of physical contact and breastfeeding), treatment options and uses of information sources?
The specific objectives of this project are the following:
1. To identify parents proposals to achieve changes in the delivery of health care in neonatal services with respect to the organisation of care, clinical practices and technical interventions.
2. To indicate broad patterns of parents social, demographic, psychological and medical characteristics within NICU.
3. To explore the expectations, responsibilities and knowledge actualised by parents to understand the actual and future health status of their very preterm infants.
4. To study the representations and practices concerning parental roles, rights and duties enacted by mothers and fathers of very preterm children in the context of NICU.
5. To evaluate the impacts of being mother or father of an unhealthy baby in the daily lives, identities and social position in the community.
The methodological strategy will rely on:
1. NICU-based surveys with parents of very preterm infants hospitalized in all NICU level III located in the North of Portugal.
2. Single and couple in depth interviews during hospitalization with parents of babies with favourable prognosis and diagnosis with morbidity associated.
3. Ethnographic observation for 6 months in a Portuguese NICU.