Nipple shields to support breastfeeding – a co-production workshop

Nipple shields can make a real difference to breastfeeding, but people's experiences of using them vary, and there are still many unanswered questions about how safe and effective they are.

The Nipple Shields to Support Breastfeeding project includes the first systematic review of the evidence on nipple shields. As part of the project, the research team brought together parents, healthcare professionals and breastfeeding supporters to discuss what the findings mean, what information matters most, and how the results should be shared.

Kelly and Eleanor were two of the 23 people who took part in the workshop. Here, they reflect on their experiences of using nipple shields and of helping to shape the research.

Kelly’s story

As a second-time mum I knew the prospect of breastfeeding my second child was high, as I had a great experience the first time around. 

My first child was born at 32 weeks old; he was initially tube-fed in the Neonatal Intensive Care Unit (NICU) at the John Radcliffe Hospital in Oxford and began breastfeeding around 34 weeks old, with no concerns, he grew quickly and healthily.

My second child was born at 30 weeks old, and again, initially was tube-fed in the same NICU. This time around my baby grew slowly and needed some medical interventions. When my son expressed an interest in breastfeeding he would tire easily, and after slow growth, regress back to being tube-fed (not meeting the discharge guidelines to qualify for the home tube-feeding programme). A sense of desperation to get us all home kicked in. 

It was late in the evening one night when my baby was around 6 weeks old that the Nursery Nurse asked if I would consider using a nipple shield. With my acceptance she dashed off to get a nipple shield and supported me in positioning both the shield and baby to obtain a successful latch. It was from this moment that my baby appeared to tire less easily and take enough breast milk for a 'good feed', settling himself quickly, or nodding off with a full tummy. 

The nipple shield initially felt a bit odd particularly because I hadn't heard of them before or needed them the first time around. There were several occasions when the nipple shield fell off or became misplaced during the feed (such as when I sat my baby up to gently wind him, and the nipple shield would fall off onto the floor or down the side of the chair). However, with the support from the hospital professionals (the feeding team, nursery nurse and dieticians) I was comforted that the baby was taking 'mother’s milk' and gaining weight. We eventually left hospital more than 6 weeks later when my baby weighed a tiny 2130g.

Eleanor’s story

Before our daughter was born, I was determined I was going to breastfeed. I went on multiple breastfeeding courses and refused to buy any bottles because I was stubbornly sure we would make it work. After a long labour my daughter fed for 2 hours and I thought we had breastfeeding sorted, but soon after that she just couldn’t latch on again.

She would get upset and frustrated at the breast and despite lots of breastfeeding support she just couldn’t latch on at all. For 10 days I was pumping and she was finger feeding, and then at one breastfeeding support session someone suggested trying a nipple shield. I had all sorts of fears about using them, mostly led by things I’d read online, but we tried and it worked - I could finally feed my baby at the breast! 

It was very good timing because that day we were admitted to hospital because my daughter had a skin infection. With ADHD, the admin of pumping and storing milk was already a lot at home but on a children’s ward was almost impossible. When we started using the nipple shields, it still took very careful positioning and 4 hands to get her latched on (especially to stop her hands from knocking off the nipple shield!) but at least I could stop pumping. 

Whilst nipple shields were in some ways a great gift, they also became the new nemesis; without them, I couldn’t feed my daughter, but whilst in hospital she got a mouth infection so they had to be sterilised, I had to made sure we always had them with us, the beginning of the feed would take ages because she would keep accidentally knocking it off, and she was also a very messy feeder with them so I had to have a constant supply of bibs and muslins to avoid us both getting covered in milk. I was both very grateful for them, and desperate to get rid of them as soon as possible!

Everything I had read online told me we needed to use them for as short a time period as possible so I kept trying without but then we were back to square one with my daughter screaming and not latching. I was encouraged by lactation consultants to be patient and that one day she wouldn’t need them anymore. That day came after 10.5 weeks. For no apparent reason, that time when I tried without the shields my daughter managed to latch on, and we have now been breastfeeding without them for 22 weeks! I felt like there was a lot of misinformation and conflicting information out there about nipple shields, but in my sleep deprived state it was hard to tell the facts from the fiction.

Before I was a mum, I was a research-active Speech and Language Therapist, so when I found out about this workshop, I thought being involved would be a perfect way to blend my love of research with my breastfeeding experiences so far, and to hopefully find out some information about these little pieces of silicone I had such a love-hate relationship with!

The workshop

Eleanor: It was a warm May day at the Old Fire Station, Oxford, and a room full of people gathered with one thing in common – to help a team of researchers get their project about small, strangely-shaped pieces of silicone, and nipples, right. I was one of those people!

Kelly: Upon arrival we shared coffee and pastries with others who were helping to shape the project.

Eleanor: We were a wide variety of people; researchers and health care professionals, breastfeeding supporters and mums. The group was balanced to ensure a diversity of perspectives were heard, and large enough to get variety but small enough to not feel intimidating for people who don’t usually live in the research world.

Kelly: As one of two attendees with a baby in tow we felt super comfortable 'setting up camp’ for the day. The research team had thought of everything - an armchair for feeding, a privacy blanket, a play mat with various toys and cushions. Thank you!

Eleanor: The research team had completed their systematic review, and our job was to provide information on what outcomes matter and how to best share the results with others. The facilitators talked us through some confidentiality and participation rules to ensure everyone felt safe to contribute.

Kelly: Over coffee we completed an ice-breaker; we formed a line in alphabetical order by finding out each other’s names. Then we divided into small groups and wrote down our thoughts, feelings and worries about nipple shields. We placed them in order of most importance for us – the writing and orders varied in our groups depending on our own experiences. The research team photographed these arrangements. 

Kelly: Then, after a comfort break, we were presented with the results of the research so far. We were invited to guess what the results might be in return for chocolates rewards. We understood the reliability of the data and how the studies had been selected.

Eleanor: And our questions and comments were noted down as we went through.

Kelly: Then, an amazing and inclusive Middle Eastern lunch and comfort break.

Eleanor: After which, we returned to our groups to have a go at writing the ‘key takeaways’ from the systematic review.

Kelly: To work on this we had a series of group discussions focusing on what words, phrases and level of detail the researchers should use to explain the results for each of the outcomes of the study. I sadly had to dash off at this point to collect my older son from school as his afterschool care fell through.

Eleanor: This was followed by a final session looking at how, when and to whom to disseminate the results.

How did the workshop feel?

Kelly: Wow! I felt the workshop was empowering. It was a great privilege to be among other like-minded participants and share our experiences of using a nipple shield first-hand with other practitioners and parents. Research projects like this are so valuable and this is a project that feels close to our hearts. The workshop was interesting, engaging and positive.

The start of our breastfeeding journey this time around was stressful and I cried a lot - especially when my son wasn't gaining the expected weight and we were weeks away from being discharged from the hospital. In this instance I just pumped milk for my baby and the Oxford Milk Bank. In the weeks when we recognised our son was putting on tiny amounts of weight I had great hope. The nipple shields were an absolute blessing and got us back on our journey. There were several projects we declined throughout out time at the John Radcliffe Hospital. But with this positivity in mind I felt we could help share the messages from this research project with other mothers. Attending this workshop felt like a great community. 

Eleanor: The day felt very empowering and accessible. Throughout the day, the language used was inclusive and well explained to ensure everyone could stay on the same page and share their views and experiences. I have ADHD and attended with my 3-month-old baby, but both big and little details were taken care of to ensure both my comfort (e.g. a comfy chair and a private room for breastfeeding, as well as plenty of food!) and my ability to participate effectively (e.g. someone to write down my thoughts when my hands were full). There were also fidget toys, colouring and opportunities to move around to support fellow ADHD-ers, and facilitators to keep us on track and on time, ensuring everyone had a chance to contribute if they wanted to. I really enjoyed hearing the perspectives of others as well as having a chance to share my views and experiences. It was also such a joyful time to be in a place full of people who all care about something that matters hugely to me; supporting breastfeeding.

Live illustration

Eleanor: The whole day was captured visually by Camille Aubry, a live illustrator. This gave a really helpful visual summary and also a chance for participants to feed-back afterwards on whether their views had been adequately and accurately heard. It felt very special to see some of my comments captured on that visualisation - it made me feel that my experiences really do matter and are helpful to share. 

Kelly: Camille was sat in the room drawing throughout the day in the most dignified way. We were surrounded by some enormous posters of her existing work for the study and we were excited to see the illustrations from the workshop, which we saw on the day and received by email. In particular I liked the illustration of the stepping stones; this certainly resonated with my own feeding journey.  Camille is so clever to ensure inclusivity and diversity.

How the workshop has changed the project

Kelly: Some of the results had been collated by the researchers in a way that was too broad for the attendees – the researchers have now grouped the results in a way that the attendees preferred, and some results have been described in a more specific way.

Eleanor: The wording of a script for an animation has been designed including phrases developed on the day, and including the information which the participants felt was most important to share, with the results recategorised into groups which felt more intuitive to the participants.

What did the researchers think?

Rebekah: 

The feeling in the room on the day was magical. Every single person who said they would come, did. It wasn’t an easy task for many people to be there – demanding jobs, multiple children, children with additional needs, and trauma. They brought their different experiences, interests, ideas and needs, and shared these generously. They listened with kindness and curiosity to each other and to us. They had so many useful questions that we had to skip a whole session we had planned and still didn’t get to all the answers!

The changes that the attendees made to the way we have grouped the results and the way we are describing the results are so fundamental that it is hard to remember why we thought any other way was a good idea. I can’t work on any part of the project without remembering something vital that a workshop attendee (or one of the many other PPI contributors who informed the project) said or wrote.

The one big disappointment for me has been how long it has taken for us to pay our attendees for their valuable time and their expenses to attend the workshop – we will find a way to do better next time.

Overall, I feel incredibly proud and hopeful to be part of this team who are determined to improve the experiences of those who come after us, and who have the chance to achieve this.