Reflux – Bringing the parents voice to healthcare professionals

I was chatting recently with friend and peer about a piece of work she was doing, she wanted to bring the voice of parents to same GP training she was collaborating on. Helen is a Clinical Psychologist, who helps professionals, to help people with more compassion and understanding.

The training she is collaborating on focuses on helping healthcare professionals understand how being the parent of a baby with reflex feels, the challenges this presents and how they can better support parents.

She wanted to bring the voice of these parents into the training and need to ask parents a question and collate their answers into a format that would be accessible. I suggested using Mentimeter, an online tool which I use in my NCT work.

“Which words best describe your feelings as the parent of an infant with reflux?”

The word cloud that Mentimeter produced

What does Helen say about the results?

“Thank you so much to all the parents who were amazingly generous and took the time to complete this.

The words you wrote really get across the experience of this, and makes me want to virtually high five and hug you all at once.

I hope maybe reading the whole word cloud helps you feel connected to one another, and also connected to something great:

Helping professionals to try to understand how this feels and improve their practice accordingly.

If you can’t see the exact words you wrote its because it was so similar to someone else’s word that I merged the two – for example ‘tired’ was merged with ‘exhausted’, and ‘stressed’ was merged with ‘stress’. I tried to stay as true as I could to your words without losing the sense that many of the feelings were very similar.

Thank you once again, from Helen”

What is reflux?

Reflux is when a baby brings up milk, or is sick, during or shortly after feeding. It’s very common and usually gets better on its own.

NHS – Reflux in babies

Reflux is the medical term for what happens when stomach contents come out of the stomach into the throat or mouth. This is accompanied by small amounts of stomach acid which can irritate the throat causing pain and discomfort.

If this occurs regularly it can make babies fussy and irritable, leading to difficulty feeding, crying and difficulties in settling. As a parent this can feel incredibly difficult to manage. Supporting a baby who is frequently uncomfortable, in distress or pain and resisting soothing can be draining.

“Very common”?

  • It affects nearly half (at least 4 out of 10) of babies younger than 1 year.
  • Usually no tests or treatments are needed.
  • It tends to start before the baby is 8 weeks old.
  • It can happen a lot – some babies bring up milk 6 or more times a day.
  • It normally happens less often as the baby gets older.
  • It gets better on its own in most babies (9 out of 10) by the time they are 1 year

Reflux is more common when babies:

  • are premature or low birth weight,
  • have a cows milk allergy
  • have muscle or nerve impairment such as cerebral palsy.

If you are concerned your baby may have reflux you should seek support from an infant feeding specialist or healthcare professional. Peer support can be invaluable, finding other parents who have insight into your situation can be very reassuring.

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How should you be supported by healthcare professionals?

The NICE Guidelines state:

If you see a healthcare professional about your baby’s regurgitation or vomiting, they will talk with you about your baby, their symptoms and their general health, and they may examine your baby. This is to make sure your child is well, and to check that there is nothing else that could be causing the problem. It will also help the healthcare professional decide whether any tests or treatments are needed or whether the problem will get better on its own.

NICE – Reflux, regurgitation and heartburn in babies,
children and young people

If your baby is breastfed, you should also be offered a breastfeeding assessment with a suitably qualified person (Infant feeding lead, IBCLC), alongside support for the reflux.

What questions should you ask?

With each treatment option or recommendation remember to use BRAIN, to isolate what benefits you can expect to see and if there are any things to take into consideration.

Why do I think Helen’s work is important?

I think having the parents voice heard in the training of healthcare professionals will give new insight and understanding into a unique experience.

The words in the word cloud are echoed in the conversations I have with many parents. Often GP’s and health visitors don’t have a lot of time to ask how you are. Embedding the experience of parents into the training they receive will help them to understand what you might be feeling. Hopefully this will make them more mindful of the language and terminology they use and that reflux has an impact beyond feeding.

The parents who supported Helen’s work will make a difference to the thinking of healthcare professionals, setting ripples in motion that reach far beyond their own experience.

Further reading

Understanding Reflux – Living with reflux Charity

NCT What is baby reflux? Symptoms and support

NICE Guidelines – Gastro-oesophageal reflux disease in children and young people: diagnosis and management