Working with parents and carers

In this video, Silke Mader, Chairwoman and Co-founder of the European Foundation for the Care of Newborn Infants (EFCNI) and the Global Alliance for Newborn Care (GLANCE), re-introduces herself, the work of EFCNI, and how they work with parents and families of newborn infants. We will explore this content throughout this week.

Collaborating with parents and carers on nutritional care of preterm infants does not only involve the period they are in the NICU. This step explains the other times when healthcare professionals can talk to parents and carers and provide support.

Antenatal period

Many parents do not anticipate that their baby will require neonatal intensive care, but their involvement should be initiated in the antenatal period where possible, not just when they are in the NICU.

Some parents may have early, regular antenatal contact with obstetric and fetal medicine teams, such as in cases of maternal illness. Other parents may begin preparing for the NICU if early ultrasound scanning identifies a specific problem, such as slow fetal growth, or a complex condition, such as congenital heart or gastrointestinal disease. Women at high risk for preterm birth may also be identified during the antenatal period and can receive support to help understand what this may mean for their family.

Some of these risk factors are highlighted in the infographic below.

Regular clinic attendance provides an opportunity for neonatal teams to explain and better educate families about the importance of mother’s own breastmilk (MOM) and common nutritional management, such as the use of gastric feeding tubes and donor human milk (DHM).

Hospital admission due to preterm, threatened preterm, or labour

There is usually time for the neonatal team to meet with parents prior to delivery and explain overall medical care and likely outcomes. This applies to both women who are admitted several days ahead of delivery if there are major concerns about fetal wellbeing and in the situation of unexpected preterm labour.

During this time, there is an opportunity to promote the importance of human breastmilk. Parents who did not intend to breastfeed often choose to provide their own expressed breastmilk when they understand its importance. After medical management and likely outcomes have been explained and the parents have had an opportunity to ask questions, a useful phrase might be:

At this stage, a brief discussion and a short information leaflet may be enough. Whilst physicians may be the least qualified team members to provide direct support with lactation, the attitudes and behaviours of doctors hold enormous value for parents. Remember, nutrition is everyone’s responsibility, and physicians must be actively involved in promoting the benefits of human milk.

Immediately after birth

Many women who have just given birth to a sick infant are likely to be overwhelmed and stressed, so it is important that conversations provide information and support without causing alarm or fear.

The image below highlights how to support parents in these situations.

If you require a screen-reader compatible version this is available as a PDF.

During neonatal care

Many parents worry about the weight gain and milk tolerance of their baby. It is therefore crucial that parents’ expectations are managed to avoid unnecessary concerns. We learnt in week 3 that early weight loss is normal and expected. This information should be explained to parents. Parents should also be made aware that weight gain may be slower than centile lines on a growth chart, and babies can take several days or weeks to tolerate full milk feeds.

© gettysignature, Canva, 2022

Parents frequently wish to know more about certain aspects of nutritional care but may not feel comfortable asking. Therefore, it is vital to be proactive in offering opportunities to learn more, ideally through direct conversation.

Common areas where parents frequently say they would have liked more information are listed in the table below.

If you require a screen-reader compatible version this is available as a PDF.

In the next step, to further your understanding of real parental experiences in the NICU, we will be hearing from 2 parents who share their thoughts on the support they received in the NICU.

Family integrated care (FiCare) and active involvement on the neonatal unit

Historically, many parents were excluded from neonatal units and only given limited opportunities to be actively involved in providing care. Numerous studies now show that direct parent involvement improves outcomes and reduces complications, and FiCare must now be seen as the standard of care throughout the world.

There are several examples where parents can be more actively involved in nutrition, aside from the obvious provision of mother’s own milk.

If you require a screen-reader compatible version this is available as a PDF.

Going home

This course is focused on nutritional management until around 36 weeks corrected age and does not address nutritional requirements after discharge. However, it is important to gradually educate parents about nutritional care in the period leading up to discharge.

The several areas to be considered have been condensed into 3 groups in the infographic below.

If you require a screen-reader compatible version this is available as a PDF.

Share your thoughts on how we might better prepare parents for nutritional aspects after NICU discharge in the comments section below.

Please note: To ensure confidentiality, do not disclose information identifying individuals/healthcare providers in comments sections of this course.