For the best possible start

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Parents are the most important people to a child. This is the premise on which Karolinska bases its family-centred neonatal care. "It's about involving parents in the care as early as possible and minimizing separation right from birth," says Siri Lilliesköld, nursing manager for the Neonatal Care patient area at Karolinska.

Family-centred care at Karolinska University Hospital is based on the NIDCAP (Newborn Individualized Developmental Care and Assessment Program) care model and the SFS (situation-adapted family cooperation) training programme, where the role of staff is to coach, support and educate the parents in the care of their child.

"It's about teamwork with the parents. From the very beginning we see the parents as the primary care providers. This doesn't mean that they have to take responsibility for medical care, but that they must be strengthened in their parental role. If we coach them, they become experts in identifying and interpreting their child's needs," explains Lilliesköld.

Around 10% of all newborn babies require neonatal care. Half of these babies are premature births and half need neonatal care resources for other reasons. The care facilities are designed so that parents can stay at the hospital with their child. Those who are ready to leave the hospital earlier can be given home care for a transitional period.

Studies of family-centred neonatal care

Studies examining the effect of different elements of family-centred neonatal care have reported positive effects both on the child's care time and on the health of the child and the parents in both the short term and the long term.

Stephanie Lundgren and Adam Norström's daughter Nova was born at 27 weeks. Just outside her parents' room at Karolinska Huddinge is Nova's incubator, where she is connected to monitors measuring her heart rate, oxygen levels and breathing. Nova still needs help breathing, with a small nasal cannula providing her with a regular flow of oxygen through her nose. Staff are available around the clock to provide coaching. In Huddinge, a family will meet three care teams in a single day. The basic team consists of a nurse, one or two nursing assistants, a doctor and sometimes a midwife. The extended team also includes a counsellor, a psychologist and a dietician.

Parents are involved

The parents really appreciate the opportunity to be with their daughter around the clock in their own room. They take turns staying at the hospital.

"Being involved is the best thing about family-centred care," says Lundgren.

Their two sons were also born prematurely. On those occasions, the children were cared for on a general ward with other children and the parents did not feel as involved in the process.

"Here we have rounds with the staff and can see what is happening with Nova every day," says Norström.

Sharing information

Sharing all information with the family, without exception, is an important principle of family-centred care.

"One example of this is when we are doing our rounds and we ask for the parents' views and opinions instead of just telling them what we have decided, which is what we used to do," says Lilliesköld.

Family-centred neonatal care began to be established at Karolinska in the early part of this century. Lilliesköld was trained in this care philosophy and approach from the very beginning.

Her colleague Jessica Schiött, Care Unit Manager for the Neonatal Care patient area in Huddinge, on the other hand, began her career when the old approach still applied. That was in the late 1990s at Karolinska's unit at Danderyd Hospital.

"The parents could be there if they wanted to, but there was nowhere for them to go. I worked nights and thought it was really difficult with parents just standing there watching. We were the ones taking care of the children; they were 'our' children."

It was not long though before Schöitt became involved in the introduction of kangaroo care, where the child is held in skin-to-skin contact with the parent. At the same time, scientific studies increasingly illustrated the importance of parental presence at an early stage.

"It was an eye-opening time, with role-play exercises and lectures," says Schiött.

"But we are in the middle of a generational change, with the new approach replacing the old one. There is sometimes uncertainty about whether everything can be discussed with the family, for example, when one care team is handing over to another care team."

Jessica Schiött, Care Unit Manager och Siri Lilliesköld, nursing manager. Both at the Neonatal Care patient area.

Training for healthcare personnel 

Establishing new values in the professional role is an ongoing process. As of a couple of years ago, all healthcare personnel have been trained with a focus on the theories behind family-centred care. Training in situation-adapted family cooperation will improve the ability of staff to communicate with the parents. It is important to take into account how much they have been able to cope and adapt to their new life situation. Over the course of two days, theory is combined with exercises in dealing with different people in situations staged by actors.

"The training is incredibly good and provides both tools and a great deal of stability in the staff group. I had to deal with aggression, with the actor playing a very angry father who shouted at me and made me feel worthless. This is something that can happen, as the parents are going through a crisis, and it was really useful to be able to practise this," says Schiött.

The training linked to the Newborn Individualized Developmental Care and Assessment Program is ongoing and is about individually adapting care in the best way possible based on the child's neurological maturity. This is achieved by interpreting the child's signs and signals of well-being and stress, in order to protect the child's brain during a highly sensitive development phase.

"Those who have adopted this way of working find it much more satisfying," says Lilliesköld, while Schiött adds:

"It's wonderful to accompany the parents on their journey, to see them grow in their role and feel confident and equipped for parenthood when they leave here."

Text and photo: Lisa Thorsén

Care programme in development

The future development of family-centred care for premature babies includes ongoing work to produce a regional care programme. This work involves discussions on the importance of having a cohesive care chain for the child throughout, from antenatal and neonatal care to child healthcare and school healthcare. There is also a discussion about developing psychosocial care.

About Neonatal care

Around 10% of all newborn babies require neonatal care. Half of these babies are premature births and half need neonatal care resources for other reasons.

Family-centred care at Karolinska includes the following methods:

NIDCAP (Newborn Individualized Developmental Care and Assessment Program), which means that care is individually adapted based on the child's neurological maturity.

SFS (situation-adapted family cooperation) is a training programme that will improve the ability of staff to communicate with the parents.

Caption: Parents Stephanie Lundgren and Adam Norström have rounds with the staff and can see what is happening with Nova every day.