How healthcare professionals can support parents to be involved in their baby's care

This section looks at what parents have told us about how they would like to be involved in their babies’ procedures. These include suggestions from parents and neonatal healthcare professionals for improving the process of involving parents in procedures.

We understand that the challenging reality of working in neonatal units means that some of these suggestions will not always be possible to follow. We hope that by sharing the views of parents and healthcare professionals in this way, we can work together to improve care on units for babies and their parents.

What research says about parents’ involvement in procedures

There is significant research to show that physical contact from parents can reduce a baby’s experience of pain during medical procedures. Our suggestion is that parents should be invited to be involved in procedures as much they want to be, from as early as practically possible.

Bliss has recently conducted research with parents about how they view painful procedures and how they would like to be involved. We have also conducted research with neonatal staff, to understand how communication with parents and support can be improved.

While many parents reported a positive experience around communication in the neonatal unit, of the 160 parents that responded to our survey, 53% of them said that they had not been aware that they could have had a positive impact on their baby by being involved during procedures.

Visit our page about research into parents involvement in neonatal procedures for more information.

It’s important to talk to parents about what types of touch are appropriate for their baby as soon as they feel ready when they arrive in the neonatal unit. This helps to improve parents’ confidence in caring for and bonding with their baby.

Sometimes parents might not realise how important their observations of their baby can be. It can be helpful to remind parents that watching their baby is an important part of their care and just by being there, they are doing enough.

Here are some useful resources that you can show parents to help them understand how their baby is feeling and if they might need comforting:

• ‘Look at me, I’m talking to you’ free information guide from the Bliss Shop.
• NHS South Tees Hospitals - Baby cues on the neonatal unit.
• Sensory Beginnings – Behavioural Cues

How parents can be involved

While it can sometimes be difficult to involve parents, there are very few procedures that parents can’t be involved in.

Where possible, care and equipment should be adjusted so that parents can help to comfort their baby. Where care can’t be navigated safely, alternative options for comfort should be offered to parents, for example, being in the room and talking to their baby.

Comfort holding or steady hand holding can be introduced straight away, with parents encouraged to provide a steady touch to help comfort their baby.

Babies receiving care in an incubator can come out for skin-to-skin contact before or after a procedure, unless they can’t be safely moved. Babies on a ventilator may need two care team members as well as the parents to support skin-to-skin for a procedure.

For parents that don’t feel able to be directly involved in procedures for whatever reason, information about what is happening should still be provided so that they are fully informed and able to make a choice. They should also be offered other forms of involvement, such as talking, reading and singing, or just being in the room.

Talking to parents about their baby’s procedures

Being in the neonatal unit with their baby is a stressful time for parents. This can be made even more challenging when they don’t understand what procedures are happening or how they can be involved.

Parents should be fully involved in ward rounds if possible, so that they can understand their baby’s care plan. This gives parents an opportunity to share anything they’ve noticed about their baby.

It’s important not to overload parents with information as they are likely to be overwhelmed by the situation and environment, particularly at first. Instead, provide clear and consistent messaging that helps them understand what’s happening and how they can be involved if they wish to be.

The parents we have worked with told us that these are the topics they would like to be discussed:

• What is going to happen to their baby – explain the procedure to the parents in simple language and acknowledge if it is likely to cause pain/discomfort to their baby. Try to avoid terms that are likely to influence their decision such as “you don’t want to see this” or “you might like to go grab a coffee”.

• Why it is needed and what the outcome is expected to be using simple language.

• How they can be involved, if they wish to be, and what the benefits are – briefly explain that parental touch can help reduce the baby’s experience of pain and bring them comfort. Show them the holds/touches they can do in advance of the procedure, if possible.

• When it is expected to happen, so parents can make sure they’re there, if they want to be.

• Questions? Give the parents a chance to ask questions and communicate any of their preferences, for example that they wish to be present for every procedure or that they would prefer not to be.

Sometimes this might mean repeating yourself, especially if one parent wasn’t present when you explained something before. Our work with parents has shown that this is important for dads and non-birthing parents to feel fully involved in their baby’s care.

Involving parents in difficult or upsetting procedures

Parents have told us that in many cases they were discouraged from being present with their baby during a procedure. Others reported that it was just assumed they wouldn’t want to be part of it.

In this video mothers Yasmeen, Sobia, Muriam and Zarina share their experiences of having a baby on the neonatal unit.

While these unpleasant experiences often do stay with them, parents have overwhelmingly told us that they would rather have been there to support their babies if given the choice.

Parents we have worked with have said they would prefer staff to deliver the relevant information about the procedure as objectively as possible. This is so they are able to decide what is right for them and their baby. This allows parents to make an informed choice about how they would like to be involved.

If parents cannot practically be involved in a procedure, for example under sterile conditions, try to explain why and offer alternatives for contact before and after where possible.

Healthcare professionals have told us they can find it more complicated to have a parent present during procedures. This can be because of limited space around the incubator or because a member of staff is learning a new procedure. These are valid concerns, but the vast majority of parents we have worked with have told us they would still prefer to be given the option of being involved.

Through Bliss’ surveys and focus groups, we have compiled a short list of reflections from parents we have worked with to develop this information. Below are their views on their experience of neonatal care and ideas for improving parents’ experience:

• Consistent messaging: an introduction to the neonatal unit with a clear understanding from the start of when and how they can touch/hold their baby and what role they can play in their baby’s care.

• Conversations around procedures: an objective outline of procedures to help them understand what’s happening and why.

• Having a choice: being shown how to hold/touch their baby so they don’t feel like they need to ask for permission and being able to make a choice about their role in procedures without being influenced either way.

• Involvement of both parents: a willingness to explain the situation to both parents or carers, even if this means repeating yourself.

• Involvement in schedules: knowing when a procedure will take place, as far as possible, so they have the chance to be part of it, if they wish.

• Opportunities to speak with staff: being able to understand what role they can play in the care for their baby, discuss their baby, and express their wishes surrounding their baby’s care.