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“If only we had known”: learning what really matters to parents of premature babies

Susan Giboney, BS, RT, RDMS Providence Health & Services, Oregon, USA 16 November 2019

Susan Giboney writes about how a neonatal intensive care unit in Portland, Oregon improved care for premature babies – by asking parents what they needed.


“You gave my babies their first baths. I’ll never get those opportunities back,” said Joyell, a new mother. “You dressed my babies for the first time too.” An emotional pause hung in the room, before a second parent voiced agreement. Then a third respectfully countered: “Neither of those things were important to me”.

It was at this moment that I knew we had reached the exact place we wanted to reach in the Experience Based Co-Design session, with parents from our neonatal intensive care unit (NICU). It was a place where trust and transparency had been established and where safety existed in honesty, as we shared openly and respectfully, sensing collectively we were making an impactful difference – learning from each other.

The EBCD project was initiated at the Providence Portland Medical Center NICU, which has 20 beds, serving those infants born 28 weeks and above. Providence Health & Services, which runs the unit, is a division of Providence St. Joseph Health, one of the largest not-for-profit, catholic healthcare organizations in the United States. As the Regional Patient Experience leader, I had the honor of being part of the EBCD Team, under the guidance of the Point of Care Foundation and the Vermont Oxford Network.

The importance of perspective

For comfort, we held caregiver interviews in pairs, and asked participants to identify what they felt was going well and what care or processes could be improved. Patient interviews were also conducted and filmed. Conducting patient interviews, I learned so many touching stories – their children’s names, gestational age at birth, current milestones, and individuals who served them with unforgettable compassion. I was also grateful to hear some of the improvement opportunities that the parents felt we had in their care experience or transition. It was an honor to be brought into the parents’ stories and lives, and I believe this helped me provide richer and effective facilitation as well as help parents feel at ease.

A form for parents who had been through a premature birth to give advice to new parents going through a similar experience

Learning from others

We scheduled our co-design events at an off-site venue to underscore the importance of the effort, as well remove the possibility of unintended trauma from revisiting the hospital. I developed three multi-method sessions to illicit ideas, narrow and prioritize all areas of identified improvements. Preparation and planning for these events is vital. Creating a positive tone and environment is critical, as is ensuring expectations are clear at the onset. Initially we held a dedicated caregiver session, then a dedicated patient/family session and ended with a powerful joint session.

During the course of the events it was incredible to see the caregivers go from a position of slight suspicion to active engagement resulting in 129 improvement suggestions. By and large, ‘Noise on the Unit’ was the most common area of improvement identified by the caregivers. Interestingly, at the parent event, ‘Noise Reduction’ wasn’t even on the list of ideas from our families. It was amazing to see families reunited with caregivers, and the genuine gratitude and love they expressed at the joint event.

Knowing their stories

Joyell and her husband agreed to be part of the patient/family interviews and co-design. Recounting, Joyell explained that her twin pregnancy was proceeding normally until 20 weeks when, without warning, she was immediately put on strict bed rest. Her doctor pleaded, “You HAVE to make it to 24 weeks, you just have to. And if you can make it to 28 weeks, it will be a miracle.”

Scared and concerned, Joyell immediately went to bed, determined to do all she could for her babies. Each additional day the babies had, the better chance they would have to survive, and with fewer health concerns. Twenty weeks passed to 24 weeks. Joyell counted every day – 24+1, 24+2, 24+3 and so on. Then 25 weeks, 26, 27 and then, two months after beginning bed rest, Joyell delivered … at 28+1, as she still refers to their age at birth. Sophia and Zac were born, both weighing 2 pounds and 6/10 ounces, and both requiring lots of support, including machines to breathe.

I share Joyell’s story because getting to know her, and her personal journey, allows us as caregivers and leaders to learn and better understand what is meaningful to Joyell as her babies were being cared for.

During her pregnancy journey, Joyell had missed a lot of traditional ‘firsts’: prepping the nursery, pregnancy photo sessions, packing the ‘hospital Bag’ to have ready by the door, and the like. When I asked Joyell for some photos, she quickly shared many of the babies’ firsts … the first time she got to hold Sophia and Zac, the first time she saw their face without the ventilator, first hand hold, etc. For Joyell, each first milestone was incredibly important given the overwhelming uncertainty of what each next day might bring. I share Joyell’s story because getting to know her, and her personal journey, allows us as caregivers and leaders to learn and better understand what is meaningful to Joyell as her babies were being cared for.

I know Joyell is forever grateful for the clinical care and staff, and yet the stories she shared were about the people and their compassionate support. Joyell was the parent who shared her perspective – someone that I will never forget and who changed the course of our improvement work. Through tears, Joyell reconfirmed that the noise level was not a concern. Instead she told us that we gave her babies their first bath.

I’m confident that the caregivers’ actions in bathing and dressing Joyell’s twins were well intended. However, we didn’t know what was important and meaningful to Joyell. We hadn’t looked for ways to give control back to her at a time when she had lost or missed so much.

Now that we know

Having the opportunity for our providers and caregivers to hear directly from our patients around this simple yet monumental milestone, was so powerful. We asked ourselves: How do we know what our patients are feeling during care experiences? What they are thinking – do we know? And what if any preferences may they have for their care experience? What assumptions do we make, because we don’t ask? Likewise, having our parents understand the deep desire of our caregivers resulted in an unparalleled awareness and commitment to personalization and excellence.

Our event sessions prioritized work in the communication domain. ‘ASK before ACTING’ rose to the top. The ongoing team (consisting of providers, caregivers, patients and myself) is designing branded processes and practices to ask and seek patient preferences/desires upon admission, along the care path, through re-designed communication boards and prior to discharge.

Caregivers are engaged, empowered and have been inspired by hearing from the families we serve. They sincerely desire to understand what is uniquely important to all of their patients and are thrilled to deliver when possible. And parents have expressed their gratitude for the ability to give back and to thank those caregivers and providers who cared so compassionately for their newborns, like Sophia and Zac.