Parents' experiences of transition when their infants are discharged from the Neonatal Intensive Care Unit: a systematic review protocol

The objective of this review is to identify, appraise and synthesize the best available studies exploring parents' experiences of transition when their infants are discharged from the Neonatal Intensive Care Unit (NICU).The review questions are:

Giving birth to a premature or sick infant is a stressful event for parents. The parents' presence and participation in the care of the infant is fundamental to reduce this stress and to provide optimal care for both the premature or sick infant and family. A full term pregnancy is estimated to last between 37 and 40 weeks. Preterm infants born before 28 week (5.1%) are defined as extremely preterm, while those who are born between 28 to 31 weeks (10.3%) are defined as very preterm. The majority of the preterm (84.1%) are born between 32 to 37 week and may have significant medical problems requiring prolonged hospitalization.The prevalence of preterm birth is increasing worldwide. More than one in ten babies are born preterm annually. This is equal to 15 million preterm infants born globally and the second largest direct cause of deaths in children below five. The highest rates of preterm birth are in Sub-Saharan Africa and South Asia (more than 60%) and the lowest rates are in Northern Africa, Western Asia, Latin America and the Caribbean. The preterm birth rates in the developing countries vary widely and follow a different pattern than in high income countries.The preterm birth rate has increased between 1990 and 2010 with an average of 0.8% annually in almost all countries. Morbidity among critically ill newborn and preterm infants vary widely from no late effects to severe complications, such as visual or hearing impairment, chronic lung disease, growth failure in infancy and specific learning impairments, dyslexia and reduced academic achievement. Full term infants may also experience significant health problems requiring neonatal intensive care. The most common reasons for a full term infant to be admitted to a NICU after birth are temperature instability, hypoglycemia, respiratory distress, hyperbilirubinemia and neonatal mortality. Admission of a full term newborn infant from home within the first four weeks after birth is due to jaundice, dehydration, respiratory complications, feeding difficulties, urinary tract infection, diarrhea and meningitis.In the last two to three decades, technological advances in neonatalogy have improved the survival rates of critically ill and preterm infants.Two major issues have influenced the design of the NICU wards: i) the increased volume of preterm infants with extremely low gestational age who need neonatalogy assistance, and ii) the impact of the parents' presence in the NICU to support the infant's development.The health status of preterm babies can have a significant impact on the family wellbeing and function. The separation between the preterm infant and the parents is a threat to the attachment and bonding process. Worldwide, there has been a paradigm shift in the NICUs over the last decade, inviting parents to be admitted together with the infant or at least to spend most of the day together with their critical ill and preterm infant in the NICU. Parental involvement increases the performing of Kangaroo Mother Care during the admission in the NICU and increases parental preparedness for discharge to home. This change prepares the parents to take over tasks such as nurturing and feeding. The parents are the most important caregivers for the infant during the admission in the NICU and their co-admission increases the bonding and prepare the parents for the transition discharged to home.Family centered care (FCC) based on a partnership between families and professionals is described as essential in current research on neonatal care. Family centered care is facilitated by parental involvement, communication based on mutuality and respect, and unrestricted parental presence in the NICU. According to Mikkelsen and Frederiksen, the central attribute of FCC is partnership with the core value of mutuality and common goals.A NICU is a high-tech setting where highly specialized professionals care for premature or critically ill infants. During the infants' hospitalization, the relationship between parents and nurses evolves through an interchange of roles and responsibilities. However, this collaboration is challenging due to a discrepancy between parents' and nurses' expectations of their roles.To facilitate parents' skin-to-skin contact and involvement in their infant's care, NICUs are now redesigned to facilitate parents' "24-hour" presence, also called "rooming-in". Seporo et al. describes several benefits with "rooming-in" the NICUs. Staying in the same room increases infants' and parents' possibility for "skin-to-skin care". This improves the infant's sleep time and temperature regulation, decreased crying and need for oxygen, increases parental confidence and positive infant-parent interaction. Parents' experience of "skin-to-skin care" and "rooming in" may help parents to be acquainted with their infant and thus prepare for the transition to home. However, despite these positive effects of rooming-in, some negative effects, e.g. less sleep and lack of privacy, have been described by parents who have stayed with their child in a pediatric unit.The hospitalization may challenge the normal attachment process and parents' confidence as caregivers; parents' preparation for bringing the infant home is thus essential. The infant's discharge from the NICU is experienced as a moment of mixed feelings. Going home is a happy event, but at the same time it is combined with parental anxiety. Parents' pervasive uncertainty, medical concerns and adjustment to the new parental and partner-adjustment role are common concerns. To make parents confident and prepared for taking their infant home tailored information, guidance and hands-on experience caring for their infant before discharge is crucial.During the literature research we became aware of a systematic narrative review protocol by Parascandolo et al.'s concerning nurses', midwives', doctors' and parents' experiences of the preterm infants' discharge to home. The aim of our comprehensive review is to perform a metasynthesis on parents' perspectives and their experiences of transition from discharge from NICU to home. We will include qualitative primary studies to offer a deeper understanding of the parent perspective.