Family Integrated Care: Parents as Caregivers

 

Have you ever walked through a NICU with single patient rooms (and sometimes open bay units) and not seen any parents?

I mean none, anywhere.

It’s like a veritable ghost town, filled with sweet babies, their nursing staff, and other members of the medical team… but no parents.

I’ve had this experience on many occasions, and every time there is a piece of me that is saddened. I often question why this happens. What causes this phenomenon?

Is it that the parents are busy, have other commitments, other children, or other engagements that prevent them from being there?  Are our families scared to be at the bedside because they don’t understand, and are overwhelmed by the environment? Are they stressed and just need to get away?

I would also wonder if we are good hosts and hostesses to our families. Have we created a caring, supportive environment for them to be in? Or are we territorial and restrictive? Is there something about our care and our environment that is detracting from wanting to visit?

It’s probably a combination of some or all of these questions. And perhaps, the timing of my observations.

As a former nurse manager, I often would round through the unit to talk with families and make sure things were going well. Inevitably I’d hear, “Oh you just missed them.” So perhaps it was my poor timing that led to the empty room syndrome.

So contrast my experience with a pilot study on Family Integrated Care that was completed in a Canadian NICU.1 In this study, parents were providing continual care to their baby(ies) for at least eight hours a day, 5 days a week. They became integrated into the medical care team. They were active participants instead of innocent by-standers. They weren’t a visitor to their baby; they were the care taker. They were given some education, supported by the right multidisciplinary team, and did everything for their baby. The nursing staff became a coach, a mentor to these families, and was still there to do the necessary skills (changing an NG tube, adjusting NCPAP prongs, administering IV fluids, etc).

I discussed this idea of Family-Integrated Care (FIC) in a previous blog. But I thought I would talk about why.

Why should we embrace this idea of FIC?  Why does it matter? As I was thinking about this topic, I began to think about a healthy new mom, with a healthy term baby. She gives birth and is immediately responsible for taking care of that baby. Sure, there are nurses there to guide, lactation consultants to help teach and support. But overall, she and her support system are fully responsible to care for this new life.  They go home, they provide all the care, and they learn about their baby as they go, with many calls to the pediatrician, or to grandma.

I also thought about a baby admitted to the general pediatric floor. Those moms are also expected to provide care to their baby. They feed them, diaper them, play with them, advocate for them, etc. So, given these situations, why couldn’t we adapt our NICU care to empower our families to be an integrated part of the care team? If you look at the pilot study mentioned above, along with the subsequent articles listed in the resources below, you will see there are actually few negatives to this approach.

Family-integrated care pilot study outcomes

In the pilot study, they found that babies gained more weight, breastfed more, had no nosocomial infections, had less ROP, BPD, NEC, and IVH. There were less hospital incidents reported as well.

Additionally, families had a lower stress score upon discharge than their controls, and felt more prepared to take their baby home.

Finally, when the researchers asked families and nursing staff involved for feedback on the program, it was very positive. Particular to the nursing staff, they commented that they felt more connected to the parents, and felt the role change was a positive experience for all.1

Continued efforts

If babies have better outcomes, parents have better outcomes, and nurses feel the change was positive, isn’t it worth a try?

I know change is hard. But at the end of the day, most of our NICU parents are going to take their baby home. Shouldn’t we arm them with the best education and support to help them be successful? And what better way to do that than to integrate them into the everyday care of their baby.

 

Reference

1. O’Brien, K, Bracht, M., Macdonell, K., et al. (2013). A pilot cohort analytic study of Family Integrated Care in a Canadian neonatal intensive care unit. BMC Pregnancy & Childbirth. 13:S12.

Other Resources:

Bracht, M., O’Leary, L., Lee, S. et al. (2013).  Implementing Family-Integrated Care in the NICU: A Parent Education and Support Program.  Advances in Neonatal Care. 13:2. 115-126.

Broom, M., Parsons, G., Carlisle, H., et al. (2017). Exploring Parental and Staff Perceptions of the Family-Integrated Care Model:  A Qualitative Focus Group Study.  Advances in Neonatal Care. 17:6. E12-E19.

D’Agata, A., McGrath, J. (2016). A Framework of Complex Adaptive Systems:  Parents as Partners in the Neonatal Intensive Care Unit.  Advances in Nursing Science.  39:3. 244-256.

Galarza-Winton, M., Dicky, T., O’Leary, L. et al. (2013).  Implementing Family-Integrated Care in the NICU:  Educating Nurses. Advances in Neonatal Care. 13:5. 335-340.

Hall, S., Cross, J., Selix, NW., et al. (2015). Recommendations for enhancing psychosocial support of NICU parents through staff education and support.  Journal of Perinatology. 35. S29-36

Macdonell, K., Christie, K., Robson, K., et al. (2013). Implementing Family-Integrated Care in the NICU: Engaging Veteran Parents in Program Design and Delivery.  Advances in Neonatal Care. 13:4. 262-269.

O’Brien, K., Bracht, M., Robson, K., et al. (2016). Evaluation of the Family Integrated Care model of neonatal intensive care:  a cluster randomized controlled trial in Canada and Australia. BMC Pediatrics. 15:210.