Standards in practice – Best practice example for standards of care depicting the NICU of the future
written by Dr Atle Moen, Consultant in neonatology at the Department of Neonatology, Rikshospitalet, Oslo University Hospital, Norway
Our knowledge of how hospitalised term and preterm infants perceive, relate and are influenced by their surrounding environment has improved significantly during the last 20 years. Infants are negatively influenced by environmental stress that may destabilise respiratory and circulatory function. During intensive care treatment they may be exposed to toxic stress from painful procedures and a stressful physical environment with the absence of parents as caregivers and regulators of the infant’s stress response. Toxic stress in preterm infants has been shown to influence gene expression through epigenetic mechanisms that may permanently change stress responses throughout childhood and maybe into adult life. Stress and permanent changes in gene expression seem to be a pathway for the finding of structural changes in the brain and suboptimal neuro-developmental outcome later in childhood.
In the traditional open-bay NICU with many infants in one large single room, it is difficult for parents to be present for more than a few hours every day. Still an infant needs the parents 24/7 ready to sooth, comfort and regulate stress response whenever painful or stressful procedures are carried out. Designing a NICU of the future is therefore both an architectural, a medical and an ethical challenge for the healthcare system. This responsibility and challenge has to be recognised by NICU staff, hospital administrators, hospital planners and architects.
The NICU of the future must provide a protective physical environment for the infant. The little patient is dependent on parents for regulation through skin-to-skin contact, breastfeeding, parental speech and olfactory stimuli. The experience from units with such an environment is that parents become the infant’s best advocates: they protect their child from overstimulation, overdiagnosis and overtreatment. They are also able to support the infant developmentally and physically through days and weeks of painful and stress provoking intensive care treatment.
I once asked the father of a 27 weeks gestation preterm girl how he felt when he was handling his tiny baby girl and if he was afraid of doing something wrong. His answer was very simple; You do not need to worry at all; this child is my life and I would never ever do anything that could harm her. This is probably how most parents feel, and an important job for the staff is to educate and to empower parents and let them provide care and support for their child through stressful and potentially painful procedures.
There are both scientiﬁc studies and practical experience of measures helping parents to stay in the unit with their child. Parents should be included in the care of their infant from day one and recognised as important members of the team caring for the child. Parents are not visitors to their infant, expected to leave when caring measures or procedures are performed. They should be introduced into daily care and as they get more experienced they can also be included in
tasks and procedures traditionally considered nursing procedures like feeding through nasogastric tubes or replace the tube when it falls out.
Parents need protection from visual insight and have their own protected place next to their infant. They need at least a comfortable adjustable chair to sit in with their infant, but space for a full electrically adjustable hospital bed increases presence and skin-to-skin time signiﬁcantly. Noise from alarms, loud speech or noise from medical equipment may contribute to a feeling of stress and discomfort. Not being able to turn oﬀ the light is also an obstacle for long-term presence of parents.
It is also a prerequisite for parental presence within a social security system to provide some economical compensation when they are absent from work to care for their infant.
NICU staﬀ with experience from traditional open bay units with limited possibilities for parental presence often argue that it is stressful and not good for parents to stay too long in the unit, and that parents should go home or to work to “relax”. It is then important to remember that the reason parents are stressed or unable to stay may very well be the physical environment and the verbal and non-verbal signals parents gets from the staﬀ rather than fatigue of being with their child. When both staﬀ attitudes and the physical environment support parental presence, studies show that most parents prefer to stay with their infant for most or all of the day’s 24 hours.
In 2012 the NICU at Drammen hospital in Norway opened a new 17 bed NICU. The NICU cares for infants inborn from 28.0 weeks. Infants born even earlier or requiring surgical or advanced intensive care were born at the regional unit and transferred to Drammen when stable enough to tolerate the transport.
Until 2012 the Drammen hospital unit was a traditional open bay unit. In the new unit all infants and parents are allowed to stay together from birth until discharge. Each room has an outer area for the infant incubator and an inner area for parents with two high quality hospital beds 105 cm wide electrically adjustable to support parents giving skin-to-skin care. At day time there is no physical separation between the parents and infant area and all equipment (CPAP, pumps, ventilators) are mounted on ﬂexible arms allowing easy transfer of the child from the incubator to the parents bed without disconnection for skin-to-skin care as often and as long as parents feel comfortable.
Each patient area includes a separate bathroom for parents. During night time there are ﬂexible folding doors to lock oﬀ parents sleeping area, while there is still direct access to the infants caring area for nurses without interrupting parents.
Both parents are provided three daily meals in an area outside the room but inside the NICU unit where they are also offered the possibility of a relaxation area. All patient rooms have wireless network connection, but there is no TV inside the patient rooms to avoid disturbance of the child. Parents are allowed to use their computers for work and relaxation in the patient room but preferably with earphones.
The unit has wireless monitoring from the patient room directly to a phone in the nurse pocket with audio and visual alarms.
The main idea of the unit was not to build single rooms for infants; it was to provide a physical environment that optimises protection of the child and provides parents with an environment that makes it possible for them to stay 24/7 if they wanted.
The experience so far has been positive. More than 90% of parents appreciate the opportunity to stay with their infant and participate in care. Most parents stay more than 20 hours daily and sleep over night in the room. We regularly observe infants transferred from the regional unit with high oxygen requirements and frequent apneas that within hours reduce their oxygen requirements and improve cardiovascular stability due to less stress from sound and light.
It is challenging and sometimes difficult for the staff to change their way of thinking and work this close with parents present all the time. These challenges must be acknowledged in the process and preparations should start years before the actual change of the caring environment. When moving to a new unit the most diﬃcult part is to change the culture from a paternalistic culture of caregiving where we as staﬀ “know best” to a relationship between staﬀ and parents where shared decision making is the cornerstone of patient care. Shared decision-making does not leave medical decisions to parents, but it is a fact that most of our treatment and daily practical decisions are based on local traditions and personal preferences and not on hard scientiﬁc evidence. These types of decisions may be explained and discussed with parents. Parents living together with their infant represent a superior continuity of care compared to staﬀ going home after an 8 hours shift.
Therefore, parents can often provide supplemental information about the state of the child that may reduce the need for blood tests, x-rays and other measures. After a few days, parents know their infant much better than the staﬀ and therefore also may solve issues of instability or discomfort diﬀerently than doctors and nurses are used to.
The NICU of the future should envision the world from the infant’s point of view. NICU design must support the infant’s physical and developmental needs through a most critical and stressful period of life. In order to do that it must be designed to make it possible for parents to do their important job as the infant’s primary caregivers and advocates by staying in the unit and live together with their infant as much as they are able to, not limited by environmental stressors or staﬀ attitudes.