Family centred care and family delivered care – What are we talking about?

Abstract

Family centred care (FCC) is an integral part of high quality neonatal care in developed countries. More recently, family integrated care (FIC) is increasingly becoming a more popular model of care delivery in neonatal units. We strongly believe that FIC is the voice of the modern family in the neonatal unit and will provide significant benefit not only in terms of infant medical outcomes, but will also reduce stress, anxiety and depression in the family; improve their ability to cope and through structured competency based educational programmes will result in true partnership with parents. In this article we have discussed the historical perspective and recent evidence around FIC and compared this with FCC. We have also discussed the basic principles of FIC and then compared the various existing professional and parent focused neonatal care programmes and the advantages of FIC over those traditional models of care.

Introduction

Over the last few decades advances in neonatal care have pushed down the age of viability resulting in the survival of more extremely preterm infants. Although childbirth is a great leveller in life (Chalmers, 2013), the birth of a preterm infant can fill the parents with significant anxiety and stress compared to term arrivals (Lau and Morse, 1998). In the highly technological environment managed by trained healthcare professionals in the neonatal intensive care unit (NICU) the parents are physically, psychologically and emotionally separated from their infants in a situation when a new family is about to bond. The parents may experience fear because of the incredible situation of a premature infant arriving early, have their hopes and dreams shattered, they may blame themselves for the situation and experience intense guilt and anger (Flacking et al., 2012, Woodward et al., 2014).

Parents can also feel they don't have a role in the neonatal unit while the baby requires intensive care as their loved one is looked after by the specialised healthcare professionals. Once the mother is discharged home, the parents can find it extremely difficult to cope coming to the hospital regularly to see their infant in the NICU and managing their life with other siblings and travel (Stjernqvist, 1992). They may doubt their ability to care for their infant who they find difficult to bond with; hence, it is not surprising that the mothers of preterm infants experience significantly higher rates of depression when compared to their term peers (Veddovi et al., 2001). Also nearer the time of discharge home from a medicalised intensive well monitored environment to a home setting with no monitoring or trained healthcare professionals, parents find it extremely challenging and difficult to cope. Home support programmes have been shown to reduce stress and anxiety but not impacted on maternal coping (Brett et al., 2011).

The setting of the NICUs in the Western world have changed over the last decades influenced by evidence emerging initially from the Indian subcontinent and Eastern European countries such as Estonia. In those countries a lack of trained healthcare professionals resulted in bringing the mothers to the cotside and supporting them to look after their infants. This resulted in reduced mortality (Daga and Shinde, 1987, Karan and Rao, 1983), mortality from neonatal infections (Mohan and Karan, 1986), less use of antibiotics, better breast-feeding rate (Karan and Rao, 1983), improved weight gain (Karan and Rao, 1983) and earlier discharge home (Karan and Rao, 1983, Bhutta et al., 2004) and reduced re-admission rates (Bhutta et al., 2004, Bastani et al., 2015). A pilot study from Tallinn, Estonia showed these improved infant outcomes of as reduced neonatal infection, improved weight gain and breast-feeding rate (Levin, 1994). These studies also reported better parent experience, confidence and reduced anxiety (Bastani et al., 2015).

While the western word with the technological advances and machines around the cotside was pushing the parents further away from their infants, the lack of provision of highly sophisticated medical care and lack of trained healthcare professionals was bringing the parents and infants closer in the neonatal units of the East. However, during the latter half of 1980s there was a realisation in the West that for better neurodevelopmental outcomes early interventions and a humane approach is necessary. This has led to development of structured programmes such as Neonatal Individualised Development Care Programme (NIDCAP) (Als et al., 1986), Mother Infant transaction (MITP) programme (Rauh et al., 1990) and Creating Opportunities for Parent Empowerment (COPE) programme (Melnyk et al., 2006). The main precept of these programmes is to support parents either by educational interventions or care-by-parents model or professional focussed support of the infant with developmental care programme.