Family-centred care in times of the pandemic

An interview with Atle Moen

Dear Dr Moen,

In your paper „If parents were a drug“ [accessible via Wiley Online Library], you describe how involving parents in care procedures and giving them an opportunity to provide skin-to-skin care, has proven to be beneficial for hospitalised newborns in short and long-term outcomes. You also claim that if these evidence-based benefits could be administered in form of a drug, the common practice would most likely be to give this drug to the little patients. Yet, in many NICUs, family centred and infant developmental care which includes skin-to-skin-care for instance is still not being implemented.
What, in your opinion, is the reason for this slow process of changing care routines in some NICUs?

I have been thinking a lot about it and there are probably several answers.

First, the medical community is a conservative profession. It may take years and sometimes decades from a well-documented therapy has proven effective until it is implemented into practice. To give one example, the effectiveness of steroids given to mothers to improve lung function in preterm infants was well known and tested from the beginning of the 1980s, but it took more than 20 years before it was fully implemented into clinical practice.

Second, involving parents actively in care also changes the balance between healthcare professionals and parents from a traditional, paternalistic relationship where professionals are the dominant part deciding what is best, to a more balanced relationship where parents represent the best continuity of care and want to be involved in all aspects of their infant’s care as shared-decision makers. This represents a change in culture of care whilst the paternalistic culture is deeply rooted in most healthcare-professionals. A change in culture takes time and comes gradually.

Shared decision making doesn’t mean that decisions about treatment are left to parents. It still requires medical knowledge and expertise, but most daily treatment decisions taken by doctors and nurses are not evidence-based and therefore, may vary from unit to unit and even from one doctor to another. For example, there is no evidence at all that a daily blood test to check for infections in otherwise stable infants benefits the child or prevents complications from infections or other diseases. On the contrary, it may cause unnecessary treatment with antibiotics due to so-called false-positive results, and skin breaking procedures themselves may lead to infections. Still, this test is a very common routine in many NICUs.

If you allow parents to take part in daily care and visitations, my experience is that parents often supplement or sometimes correct our view of a situation. The preterm infant may be reported having frequent breathing pauses and the nurse and I may start to worry, but then the parents say that she has been like this for the last week and she is otherwise fine. On the contrary, sometimes parents warn us about a minor change recognised by them that we might not have noticed, and it may be a good reason to do a check-up with new blood tests or x-rays.

The third reason I’d like to point out is that we as doctors think that what we do the important treatment determining the medical course and outcomes. It represents a major change in how we are thinking if we recognise parents care and efforts to be just as important for the child’s outcome as medical treatment. It should not come as a surprise that such a change in medical paradigms may take a while.

You state that a separation of a newborn and the parents, is against a child’s instinct and causes stress and increased pain perception. Thus, the only acceptable reason for separating parents from their baby is if pain- and stress-free care is incompatible with life-saving medical care.
How can this be operated in times of COVID-19? Can family centred care be maintained in such an extraordinary situation?

This is no easy question to give a clear cut answer to. But before discussing the pros and cons there are a few things that have to be cleared out.

First, the reasons for restrictions are not to protect the infant who has little or no risk for disease but to protect the staff from extensive disease outbreaks or quarantine which may compromise staffing. This is a legitimate concern.

Second, we have to agree on what is the role of the parents. Are they only visitors and may, therefore, be kept out without consequences, or are they a part of the team treating the infant? It is hardly a surprise that I consider parents an important part of the team.

It is understandable that when the pandemic reaches catastrophic levels like those seen in Italy, Spain, Great Britain, and France, one would try all possibilities to decrease virus transmission. But in other parts of Europe, like Norway or Germany where the pandemic has been far less aggressive, or when the transfer of virus in the population is low,  it is questionable if parental presence actually increases the risk for transmission to the staff to a degree that warrants regulations keeping one or both parents away from their child.

So far we cannot draw from knowledge, but at least the experience from Norway has been, that mothers who were allowed to stay with their child did not seem to increase the risk of infecting the staff. And mothers and fathers living together should be considered having the same status as possible virus carriers so if you let them stay with their child one at the time, this should not increase the risk of infecting the staff.

Through your work, you have experienced how committed parents are when they are well instructed and the NICU infrastructure allows them to be the primary caregivers of their baby. How can we foster a successful and respectful corporation between the NICU staff and parents?

Parents need to know their place in the team and fight for it. Don’t be afraid to challenge attitudes among healthcare providers. It seems to me that parents are often too worried to be the ‘difficult parent’ and thereby compromise the care given to their child.

In my experience, it may be challenging for doctors and nurses to meet parents who demand their rights and their place in the team, but from the knowledge, I have about my colleagues from all over Europe, they have a high ethical standard, are basically dedicated and emphatic and have the very best intentions for the care they provide. To challenge them on your rights as parents and infant, would not change that. Being on the conservative side and a bit paternalistic does not mean that health professionals do not treat parents and infants respectfully.  And it´s good for all of us to be challenged on the way we think about what we are doing and the way we work for the best of our patients. So, be knowledgeable parents, argue with both medical, legal and humanistic arguments and accept that things take time, but someone has to start to get a change.

To read more about the study “If parents were a drug” follow this link:

©Ine Eriksen/UiO

Atle Moen, M.D., is a consultant neonatologist at Oslo University Hospital, Rikshospitalet.
He worked for more than 10 years at the Drammen Hospital, part of Vestre Viken Hospital Trust as a consultant in paediatrics and neonatology, Clinical Director Neonatology and Medical Director of the Department of Paediatrics. In Drammen Hospital, he planned and implemented a new single room level III NICU in 2012.
His scientific focus is in neonatology, healthcare management, and patient safety.
Atle Moen is a member of the Scientific Advisory Board of EFCNI.