Neonatology is not just for the baby, but for the whole family

The medical care for premature babies is amazing nowadays, but there is still room for improvement. A premature baby is not the only patient in the neonatology department: the whole family is. Involving the family in the premature baby’s care as early as possible has very beneficial effects on the outcomes. To make it easier for parents to see which hospitals provide high quality Family Centered Care and Developmental Care, the Dutch Neo Quality Mark has been established. Jacobien Wagemaker is Program Coordinator of this Quality Program of the Dutch Association of Parents of Incubator Children (VOC). She has experience from both sides in the neonatology department: as a nurse and as mother of a premature baby.

What motivated you to start working on the Neo Quality Mark?

"I have been a member of the VOC for several years, as a professional. I was responsible for further integration of Family Centered and Developmental Care into the team culture in the hospital where I worked. That was not very easy, but with some perseverance it started to work out. First I did the quality manuals, then I focused on the team, then the facilities: single room care and other facilities to support the family. The day before I became a mother of a premature baby, I had finished the new action plan for neonatology. All of a sudden I found myself on the other side of the caretaking, with all my ambitions and frustrations I felt powerless. We were handed over to the discretion of professionals. I can only praise the technical and medical care for my son, but I became angry and frustrated because I was separated from my child and the Family Centered Care principle wasn’t integrated yet in 2009. Just before the transfer to another hospital, I came across the VOC's call to help develop a quality mark for neonatology. You can understand that I signed up immediately, because there was a lot to improve. "

How was it for you to be on the other side of care?

"Suddenly I had a child and I couldn’t see him - a quick look on the first evening, that was it. It took another 2 hours for us to be able to see him via a webcam. He was restless in the incubator, because there was no cover, no soothing touch. While I was napping, I still felt him kicking inside my belly, caused by a combination of morphine and memory. I was only waiting in the dark for the morning to come. My husband wasn’t by my side, no one who could comfort me. I felt choked up. All I wanted was that the nurses would sooth my son. I did mention that to the nurse the following morning, but she did not seem to understand me. I felt impatient, guilty, and desolate. I learned with the help of one of my NIDCAP trained colleagues how we could take care of our son. She brought a doll and all kinds of materials to teach us what to do. Until today, I'm still grateful for her help. We didn’t want to offend the nurses by telling them what to do, because we relied on their discretion. That’s why we tried to set an example by providing this care ourselves."

When we recognize that the family is a unit that needs each other, regardless of the medical care needed, we learn to invest in that family as a whole.

Why is it important to have a Neo Quality Mark?

"While process-driven quality marks all include patient aspects, it is important to have a specific patient-driven quality mark. As a patient of a certain treatment or care, you want the healthcare professionals to know what you need and how they could help: demand-driven care. If we as a family of a premature baby are not the owner of the demand for care, we will continue to receive care that is not customized for our needs. We still won’t learn how to take care of our son, we won’t actively participate in improving his health."

What are your observations regarding hospitals? Are there any trends in healthcare in the neonatology department in the Netherlands?

"Organizations put a lot of ‘family-oriented’ credos out there, such as single family rooms. You'll hear slogans like: 'You can stay with your baby 24/7 and we take care of you during your stay'. But when you come in, you often don’t see true Family Centered Care - this contrasts with what is really important during a hospital stay. We want to learn how to take care of our children and ourselves. We would like healthcare professionals to help us get acquainted with knowledge and skills in a way that builds on knowledge and competencies I already have. The care plan should be developed with us. Research shows that when families are truly participating in Family Centered Care and Developmental Care, they will leave the hospital sooner. Babies grow faster, have fewer infections and experience less stress. A hospital stay of a premature baby costs hundreds of thousands of euros in the Netherlands - and this doesn’t include additional healthcare costs later in life, caused by premature birth. Investing in this first phase is crucial."

What could be improved in the neonatology department? How could the VOC contribute to that?

"Family Centered Care is on every hospital’s agenda. When hospitals expand or build new facilities, they make sure that these facilities match the care and support that a family needs as a whole. Carefully, hospitals begin to follow the Neo Quality Program: after the first pilot projects, the first quality marks were given in 2013. Since the beginning of this year I became the program coordinator. There is still work to be done. Hospitals seek advice from patient organizations and ‘take it into consideration’, but patient needs are still not always the starting point in decision-making. The patient-driven Neo Quality Mark can be a trigger for neonatology departments to shift to treatments and care that truly fit Family Centered and Developmental Care. When we recognize that the family is a unit that needs each other, regardless of the medical care needed, we learn to invest in that family as a whole."

Jacobien Wagemaker - Program Coordinator Neo Quality Mark

Jacobien Wagemaker - Program Coordinator Neo Quality Mark

• More information about the Neo Quality Mark and the Dutch Association of Parents of Incubator Children can be found here:

www.neokeurmerk.nl

www.couveuseouders.nl