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Mother and grandmother smiling at a preterm baby inside an incubator as a smiling member of the neonatal team checks their baby

Involving parents in the care of preterm babies and preparing them for ROP screening

This article is adapted from ‘Involving the parents of preterm babies’ Comm Eye Health Vol. 30 No. 99 2017 pp 60-61.

Positive and productive relationships between healthcare teams and parents and supportive care practices, such as kangaroo care and feeding with breast milk, are known to improve preterm babies’ clinical outcomes including reducing their risk of retinopathy of prematurity (ROP).

Good communication is the key to building trust in relationships and it starts the moment a preterm infant is admitted to a neonatal intensive care unit (NICU). Communicating clearly and simply with parents about the care their baby needs and how they can contribute can help them to feel part of the team and understand the important role they play.

Encouraging parental involvement

Admission to a neonatal intensive care unit (NICU) makes parenting very difficult: tubes, monitors and incubators can get in the way of the normal bonding between parent and child. Neonatal teams who are focused on all the care activities required to ensure the survival of preterm babies can find it difficult to see the situation from the parents’ perspective.

Family-integrated care is an approach that has been developed to enable parents to have the close interaction and contact they need with their baby; this includes supportive care practices such as kangaroo care and feeding babies breast milk from the breast or using a cup.

Family-integrated care approaches and supportive care practices can change the relationship between the healthcare team and parents by emphasising - to both parents and the team - the importance of working together. Many studies report significant improvement in clinical outcomes as a consequence of adopting these practices (Wigert et al. 2014), (O’Brien et al. 2013). Studies have shown that parents who are more aware of their child’s medical condition, and who are engaged in their care while in the NICU, have more positive attitudes and are more likely to bring their infant back for follow up (Vinekar & Jayadev 2016), (Mousavi et al. 2010).

The Family Integrated Care website is a good source of information, case studies and other useful resources on encouraging greater parental involvement in the care of babies in the NICU.

Mum looking down at fondly and cuddling her preterm baby who is nestled under her nightgown and against her chest
Kangaroo care © Skip Baney CC BY-NC 2.0 flic.kr/p/oGgws

Preparing parents for ROP screening

Educating parents and increasing their awareness about ROP should start weeks before the first screening appointment is planned. Parents need to be given time to absorb the information, ask questions and express any concerns, at their own pace. Nurses are ideally placed to start talking to parents about the potential complications of prematurity, including ROP and other visual complications. It is important to take into account the amount of information each parent wants at any specific time. Appointing an experienced nurse as an ROP coordinator can further enhance nurse-parent communication. When it is time for ROP screening, to maintain trust, a nurse or neonatologist who knows the parents well can introduce the ophthalmologist.

The art of good communication

Parents of preterm infants are likely to be very anxious: they are in an unfamiliar environment and the health of their child can change rapidly. They may have other children or dependants at home and may not be able to spend much time in the neonatal unit. Parents often blame themselves for their child’s condition and can feel helpless.

All our communication should be kind and understanding. Talk with parents and not at them. It is important to find out what they already know about prematurity, vision and the eye as this can provide the basis for communication. Simple, clear language is very important, so that what we say is understandable. Ask whether parents have any questions, and allow plenty of time for them to respond. Information may have to be repeated several times and may also change as the situation changes and the parents learn more, or are asked to do more.

Answering all questions without hesitation enhances parents’ trust. We should let parents know that they can ask questions and can express their worries and concerns at any time. Empathy, listening and patience are essential in good communication, as is good eye contact. Wait until a parent has finished before you reply, interrupting can prevent parents from asking important questions or sharing important information with the healthcare team. Parents like to know the simple truth.

Excerpted from ‘Involving the parents of preterm babies’ Comm Eye Health Vol. 30 No. 99 2017 pp 60-61.

Questions for reflection

In your setting, what tools and practices does the neonatal team use to establish good communications and build relationships of trust with parents?

Parents of preterm babies need to be informed about ROP screening. When should this process start and how should the parent be prepared?

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This article is from the free online course:

Retinopathy of Prematurity: Practical Approaches to Prevent Blindness

London School of Hygiene & Tropical Medicine