Family-Centered Care in the NICU

Family-centered care has become a buzz word in healthcare. This is important in all areas of healthcare, but particularly in the care of infants and children. What does this mean and what should it mean?

I had the good fortune to hear several parents of preemies speak about their experiences at the most recent National Association of Neonatal Nurses (NANN) conference in October. One of these parents was Kelli Kelly, who founded a parent support group in Texas after the birth of her 24-week son, and six years later, the birth of her 34-week daughter. She named this support group Hand to Hold, based on her own experience as a mother of premature children. She speaks frequently on behalf of parents who have similar experiences, and her organization provides support for other parents. She says on her website that if there is one thing NICU parents want others to know, it is that the NICU stay impacts the entire family.

Also present were three mothers who spoke about their experiences, particularly in relation to discharge, and what they found helpful or might have been improved. Their struggles after discharge from the NICU were enlightening for many present. And finally, a mother and father spoke about their experience of having a 23-week daughter. They are journalists and have published a book about their experience that is a highly recommended read, titled “Juniper, The Girl Who Was Born Too Soon”.

I’d like to share some general impressions from these presentations.

These parents were shell-shocked by their experience. This was completely foreign to all of them. Their stories reminded me of the mother who said having a baby with Down Syndrome was comparable to planning a trip to Italy – only to have your airplane land in Holland.

More than one or two of these women shared that they had never even known that a place like the NICU existed.

One mother said she was having tightening in her abdomen on the way home from work, and called her OB, who told her to immediately go to the hospital. There she soon delivered her baby at less than 26 weeks. She never imagined that the seemingly innocent tightening would result in an early delivery, much less what the delivery of a 26 week infant would mean.

Some also shared that they experienced post-traumatic stress disorder after the discharge of their infants. Luckily they found benefit in counseling.

Another mother shared her frustration about waiting for discharge. The notorious 5-day countdown of apnea-free days to discharge was ongoing, and often re-set due to yet another episode. It resulted in an exchange with a nurse that she remembers clearly some five years later. She reminded the nursing professionals audience that it is important for us to remember that we are dealing with parents who are experiencing the most difficult time of their lives. Their coping resources are often stretched to the limit. We often see parents at their worst, and how we respond makes all the difference in the exchange.

Another important observation of all of the mothers’ experiences was that the opportunity to breast feed their infant was very important. It was often viewed as their one opportunity to make them feel they were fulfilling their role as a mother. Our support of this offers far more than the best nutrition that can be provided. It also strengthens the mother-infant bond in an environment that threatens it.

The Institute of Family-Centered Care has four core concepts which are:

• Dignity and Respect
• Information Sharing
• Participation
• Collaboration

In the NICU, dignity and respect is offered by respecting the parents’ choices, and recognizing that these choices reflect their religious beliefs, culture, and past experiences. It means not making comments or gossip about a parent’s decision when they aren’t around, encouraging them to be present but not judging if they can’t be present. It means making them feel a part of their infant’s care to their level of comfort, and not seeing them as a visitor, but rather as an integral part of the infant’s life.

Information sharing is critical to participation and collaboration. Healthcare teams that share information are more likely to experience participation from parents. Collaboration infers equals working together, which is not possible without information sharing. The Institute of Family-Centered Care considers collaboration with families to be more global than the daily care of their infant. Family collaboration includes working together on policies and procedures, unit design, and other areas including professional education.

At this time of year when family is celebrated, it is a good time to evaluate the family-centered care provided in your unit and your own care. We cannot underestimate the influence that we have on families in our care. Many of you continue to have contact with families whose NICU infant is now a toddler, or even teenager. Providing advice to families carries responsibility. It comes with great weight to the family who trusts their infant to our care when they are not able to provide that care themselves.