Core principles of NICU design to promote family-centred care

The standard focuses on the architectural and technical elements necessary to provide family-centred care at the cot side, consistent with the UN convention on the rights of the child. Elements that are not specific to the implementation of these care principles are not covered in this standard but are extensively covered in the standard for neonatal intensive care units by White et al. (29)

The most difficult and challenging aspect of planning a NICU environment centred around the family and newborn infant is the change in culture and mind-set that has to take place among staff and administrators. This process has to start years before the physical planning. It requires leadership with dedication and in-depth understanding and knowledge of the combined scientific and humanistic approach necessary to create a caring environment combining principles of family-centred care with high quality intensive care. It also requires knowledge and a will to work by the principles of shared decision making in healthcare.

Planning for a NICU environment facilitating optimal conditions for infant-parent contact and skin-to-skin care cannot be based only on scientific evidence, although evidence exists. A main source of information and input should come through visitation to units that has gone through the process of redesigning, and discussion with colleagues in these units about strengths and weaknesses of their design is a valuable source of information.

In the planning process, it should be acknowledged that there may be a conflict between the patient and families’ preferences and the preferences of the staff, building and technical department or the administration. Such conflicts should be handled with great caution with respect to the patients’ perspective, as the voice of the patient may otherwise be too weak to be heard. Free-speaking competent advocates for the patients’ interests should be appointed early in the planning process.

As part of the process, and before a full scale major re-design of a unit is taking place, leaders should be aware to the possibilities that minor physical changes or procedures in the existing unit allow introduction of new caring principles. An example may be to allow one or two parent beds to be placed beside the incubator or cot and then let the parents practice skin-to-skin care for as long as they wish with support from the staff. This will demonstrate to the staff that alternative ways of providing care is possible. It may also help the staff to see that most parents are very eager to participate and be present, and through participation are empowered to an extent that changes the traditional roles between staff and parents.

Although NICU healthcare professionals may be very experienced in what they are doing, it should be kept in mind that experience is most valid in the setting where it was gained. When family-centred care is introduced the setting is fundamentally changed. Parents become the best observers of their child, they represent the best continuity of care and they learn skills in caring for their child that may challenge the traditional roles of the staff. Parents are empowered and as their competence increase they may appropriately question treatment decisions or procedures carried out by the staff.

The challenge of the staff adapting to empowered and protective parents, legitimately opposing treatment strategies or decisions from the staff, change the traditional balance in the NICU. It has also been shown to reduce diagnostic testing with all the pitfalls of over-diagnosis and overtreatment without putting the child at risk of adversities. (2,30)

The challenges of redesigning a NICU focussed on family-centred care is well known and foreseeable. If adequate strategies are not developed and risks handled well ahead of implementation, the risk profile may be high. There are two studies from one single unit that has presented data in conflict with the rest of the published literature. They found increased stress among the staff and poorer neurodevelopmental outcome in infants after introduction of single-family rooms (30, 31). From the first of these two papers it seems that parental visitation rate and participation is very low compared in European NICU’s (32), and the unfavourable results may to some extent be explained by limitations and difficulties integrating parents in care. (31)

Single family rooms and NICU design is no goal in itself; it is a tool to fulfil the rights of the child to have its parents present without restrictions and to improve short- and long term medical and neurobehavioral outcome. Good NICU design creates a protective physical environment for the vulnerable sick infant and encourage parents to take an active part in the care and medical treatment for their child.