21 things we learned running a citizen science project about parenting

This is the second in a highly occasional series. In 2016 I wrote a blogpost about what we’d learned from running Nappy Science Gang. That post proved so popular on science communication twitter, that 37 people emailed me asking for a copy of the evaluation report. As that’s 36 more people than have ever read any of my previous evaluation reports, I thought it was worth doing again. (Yes, I am pretending to myself that all 37 of them actually read it. I mean, for all you know, they shared it with colleagues and it’s actually been read by EVEN MORE people. It could happen.)

After Nappy Science Gang, I felt pretty pleased that we’d now sorted out nappies. Then I looked around and thought well shit, there’s still everything else about parenting, and it’s world of terrible advice. We really need a citizen science project about that.

Fortunately Wellcome, in their infinite wisdom, agreed with me, and Parenting Science Gang was born.

The project began in February 2017, and has just finished. So here is a list of things we’ve learned in the last two years. Some are probably more useful than others.

If you have your first staff meeting in York, at the National Railway Museum, you can pretend you are in a remake of Brief Encounter.
The staff on this project were all working remotely, from around the UK. So we wanted to have some meet-ups in person, to help us work together, and York worked out a fairly central place to meet. We would probably build in more meet-ups like this if we did it again, to allow more team time.
We met up at various project events, but you all end up running around doing stuff then, and there isn’t time to look at the big picture, or just hang out together.
Katherine Mathieson from the BSA is brilliant. Not only has she supported the project, and been an insightful person to bounce ideas off, but she also gamely wore a ‘Queen of Science’ crown the kids made for her, when she came to open our results fair.
The Guides make the best cakes. Most of our project took place on Facebook, in Facebook groups (because that’s where people hang out getting parenting advice and support, and you always need to go where your audience are). But we also had real-world events to get people together. We had events all around the country, but our favourite catering was at Trefoil House in Birmingham, which we hired from the Guides. One of their volunteers came and dispensed home-made cakes and tea from an urn, for £1.50 per person. The cakes were also nice at several other venues, but you can’t touch the guides for value for money…
Super-sticky post-it notes are so worth the money, if you are getting people at events to give feedback on post-it notes and stick them on the wall. Because this is what cheapo post-it notes do.
Sad post-it notes
Photo libraries have weird ideas about motherhood.
Pretty woman holding a newborn baby in her arms

For example, they seem to think mothers are perfectly made-up and have their hair done at all times. Or, indeed, ever, in the newborn months.

Young mother looking at camera and smiling, cooking and playing with her baby daughter in a modern kitchen. Using phone, making selfie. Healthy food concept.

No-one seems to have baby sick or porridge in their hair.
They think we (and our children) are all dressed in white, in our stylish and spotless kitchens. I’d like to suggest that feeding a small child…

Happy family mother, father, child baby daughter having breakfast at home. Yes I know the child is drinking milk, which is white, but shes got a bowl of raspberries there…

Or indeed CHANGING A NAPPY…

Young mother taking care of little boy in white sunny nursery with changing table, baby crib and rocking chair. Diaper change and clothing. Mom and son in beautiful bedroom at home.

while you are dressed head to foot in white…

is something most parents are only ever going to do once…

Mothers are in photo libraries are also almost always white.

Mothers and Kids Group Playing Toys, Mother With Baby Play Building Blocks over White Background

And of course, if she’s not hanging out in her minimalist farmhouse kitchen, then a mother is usually frolicing in a meadow.

Mothers with children in flower field

It’s hard to find decent pics of mothers that are representative of reality, not corporate fiction.
Our tips
– Flickr creative commons pics for people’s own images (Remember to credit them)
– Pixabay for free pics, but they’re mostly the highly posed, corporate type, but there is some usable stuff there
– Unsplash for some really beautiful free photography (again it’s a bit on the beautiful-people side, but more arty than corporate, which makes a nice change )
– What we often ended up doing was asking our participants to share their photos, and feature actual real people.
Mother’s needs are generally at the bottom of the pecking order in the household. A kid’s birthday party will always trump their mother’s own plans (like, coming to your event). Find ways to ensure that a mother’s overriding motivation to prioritise her family can be used to make sure that she is at your event, by offering fun children’s activities alongside the stuff for mums.
All the staff working on this project were mums with small children, working part-time. We had our staff meetings on Skype. At times, they had to be rearranged for school plays, half-term, doctor’s appointments. But this was OK, because we were all in the same boat, and no-one felt like they were the one person inconveniencing the team.
More than once staff meetings were paused by the thundering cry, “MUM, CAN YOU WIPE MY BOTTOM!” I bet Richard Branson never had to wipe a child’s bottom while he was running a business meeting.
But it turns out that women with young children are still just as talented and effective as they were before they had kids, and they can run successful projects, even while working part-time. If your working practices make it possible.
Listening to a talk about PSG can reduce the quality of your weekend by 65%. I took my 5 year old to Northern Ireland Science Festival to give a talk about PSG and our breastfeeding experiments. We flew on a plane! We went to W5, the ‘totally epic’ science centre! We had dinner at Cosmo’s all-you-can-eat world buffet! Where he ate his body-weight in prawn crackers and ice cream!
Apparently these elements would have scored the weekend 11 out of 10. But ‘having to listen to your boring talk’ reduced the score to 5 out of 10.
Mums don’t get enough ‘me time’. “As a mum of two little children, I have to grab my ‘me time’ wherever I can get it. A post-bedtime visit to the deserted supermarket, a chocolate bar snarfed alone in the swimming pool car park, ten minutes locked in the loo in your own home: we all know these moments to be a sort of affordable mini-spa where you don’t even have to shave your legs.” Read more of Kate O’Hara’s hilarious review of our final event.
Women, and especially mothers, don’t feel listened to. As points 5-9 have begun to demonstrate to the perceptive reader, motherhood is a often a lonely and thankless slog. It also feels sometimes like it’s made you invisible and inaudible. Here are some quotes from our evaluation report:-

“The way women are treated when pregnant (ime) really beggars belief. It wouldn’t happen in other areas of care.”
“Soooo many examples of women feeling lied to, not listened too, of maternity care not being evidence based.”
“I think medicine is still paternalistic, women’s issues are ignored, I see it so frequently at work.”
“I watched that Michael Mosley thing on the BBC about sleep and it was all about middle aged men. And about how if their sleep is disrupted how awful it is etc etc. I was really struck by the fact no one seems to GAF* about women struggling to sleep in pregnancy or struggling with a baby waking a zillion times a night.”
*GAF = Give a fuck

This is why we are doing this project.
Our breastfeeding groups discovered that there was almost no research on what is in breastmilk produced for children over 18 months old. Even though the WHO recommends breastfeeding until at least two years old, and it being biologically normal to feed for several years beyond that. Some breastfeeding mothers in our groups reported being told by their GPs that breastmilk had no benefit once a child was 6 months old/1 year/18 months/2 years. These statements are not based on evidence. The research which exists on the composition of breastmilk up to 18 months suggests it still has nutritional and immunological benefits. And, in the absence of evidence, it seems unlikely that it turns into water at 18 months…GPs get one lecture on breastfeeding and lactation in their entire training, so they are often not best placed to advise on issues around infant feeding. (Incidentally, if you are a GP, and want to know more, I recommend the wonderful GP Infant Feeding Network. They have loads of useful factsheets and links, including about what medications are safe for breastfeeders).
Our two breastfeeding groups came up with about 200 questions they wanted to investigate between them. But when they voted, the same question came top for both – by miles. The question was, ‘What is in breastmilk produced for children over two years old?’ The groups had very different demographics and ethoses, but they clearly had enough in common (as breastfeeding mothers) that this question was of utmost importance to them. And yet science hadn’t done this experiment yet. Either no scientists thought it was important. Or no funding committee thought it was important. But when we put the decision-making power into the hands of the people whose breasts were actually doing the feeding, it won hands down.
Another group found out that no-one knew how many children were flexischooling (children going to school part-time and home ed part-time). An expert on alternative education told us that she estimated there were no more than about 500 kids flexischooling in the UK and it was a very under-researched area. A few mums in our group knew of at least 20 kids flexischooling locally, so unless Dumfries and Galloway is the epicentre of flexischooling, they guessed numbers must be higher than anyone suspected. The group decided to look into this. We did FOI requests to every council in Scotland, and found that there are officially 352 children flexischooling in Scotland. Scotland makes up 8% of the UK population, so it’s likely that the UK-wide numbers are higher than anyone realised. No-one had collected these figures until our mums did it.You can read more about the figures, and our research with teachers and parents, in our report here. And in an upcoming paper in Other Education.
Another group found there was no evidence behind common advice on dressing your baby while babywearing. One of our groups were interested in babies’ temperature in baby carriers and slings. Common advice is to have your baby in one more layer than you. But it turns out that isn’t based on any evidence. In collaboration with Dr Davide Fillingeri of the Environmental Ergonomics lab of Loughborough University, we designed an experiment to test this.
We found that there was little change in babies’ core temperatures, with OR without an extra layer. Babies are very good at regulating their body temperature. So there’s probably no need to worry.
Detailed findings are in a paper which has been submitted to an academic journal, so you’ll need to wait to read it in full. But Davide is already planning further research on this.
We organised a mass milk-in. As mentioned in number 11, our breastfeeding groups REALLY wanted to know what was in breastmilk for children over 2 years old. So we designed an experiment with Dr Natalie Shenker of Hearts Milk Bank and Dr Simon Cameron of Imperial College. We got 130 breastfeeding mums (feeding a range of nurslings from under six months to over four years) to come to Charing Cross hospital in London, and express breastmilk.
And Simon tested them in his Rapid Evaporative Ionisation Mass Spectrometer (REIMS).
Simon told us that ‘a mass spectrometer is just a really really expensive set of scales that can work out what is in something.’
As a result of this day, at least one child now thinks that all scientists make you squeeze your booboos so they can test your milk.
There are a lot of different things in breastmilk. Our mums assembled and did their pumping in January 2018, but that was only the start of the work. The analysis is still ongoing, and Drs Cameron and Shenker hope to submit a paper before the summer. One thing we do know from the initial results is that REIMS identified 6,900 different components in the breastmilk samples. And 150 of them (shown in red) seemed to vary systematically by the age of the nursling (either going up or down across the age categories). We don’t know what many of these are, or what they do. As scientists like to say, more research is needed…
Image: Dr Simon Cameron, Imperial College, London.
Our citizen scientists, being members themselves of the group they were studying, were so good at getting people to fill in questionnaires, that they surprised our collaborators.

“You guys have a great data set. It’s very, very good. Best one I have seen in a very long time. Better than my PhD students, but don’t tell them.” Dr Terry Dovey (Brunel University)
“Great sample size – that gives us plenty of power for our analyses. A good solid number of clinical cases in each group, with the ability to determine which people have 1, 2 or more problems so that we can get some ‘pure’ groups for further analysis.” Prof Jackie Blissett (Aston University)
One upshot of the research in number 16 (by Mealtime Hostage-PSG) is the discovery that children diagnosed with Avoidant Restrictive Food Intake Disorder (ARFID) tend to be more sensitive to textures and to bright lights than other children. “You just discovered that here today with this data!” (Terry). Read more about the findings of their research.
Many women are *desperate* for the chance to talk about their infant feeding experiences. One of our groups looked at mums’ experiences of advice and support around breastfeeding from healthcare providers. We shared a link on our facebook page, for people to send us their stories, and this was the first comment.

I asked the mum here if it was OK to put a screenshot of this in a blogpost. She said, “Hell yes!” See number 10. Mothers feel marginalised and ignored and they are desperate for someone to listen to them.
Both our Big Birthas group and our Breastfeeding and Healthcare Experiences group wanted to do research about listening to mums and understanding their experiences. (Of higher-BMI pregnancies and of breastfeeding support and advice respectively). Mums felt energised and empowered by doing this research.“I cried reading many of the stories and then I felt angry on behalf of all the failed mothers!”

“I am so glad this [research] was happening and I could do something constructive.”
“I really hope that people will listen to us about this. Reading the stories was incredibly powerful for me, but we’ve got to try to find a way to get that across to the people that can make changes.”
Members could see parallels between the experiences of mums in both sets of research.
“I’ve only just clicked listening to Amber Marshall’s comments [in the podcast] how the negative throw away comments experienced in the Big Birthas mirrors that of many of those in the HCP/Breastfeeding study.”

But it was obvious in all the discussions where groups chose their research questions, that a lot of maternity care, and a lot of childcare advice, is not evidence-based.
And mums feel like in most cases, they are doing the majority of childcare, with little thanks or recognition. And their voices are not heard, and the questions that matter to them are not always answered.
One of the strongest findings to come out of our evaluation was that mums taking part in PSG felt empowered, and part of a community of people working together towards a common goal.

“I am passionate about informed choice and the projects we are doing really will inform other parents to make whatever decision fits them.”
“Bringing like minded, motivated, but undervalued mothers together to buzz off each other and build interesting studies that matter to people.”
“I felt like part of a movement!!”
And finally, that taking part in PSG improves your life.

“An education. Confidence. I feel more comfortable with what information I’m capable of taking in on my own, and what my limits are. Makes speaking with a doctor so much easier!”
“This was one of the most empowering things that I could have gotten involved in at a time when I was feeling vulnerable and frustrated.”
“I felt like such a fraud even commenting on discussions when I joined, and although I am SUCH a non-sciencey noob, I feel a teeeny weeny bit more confident that I’m contributing and progressing our projects. That’s just amazing, me, actually being useful in science feels incredible.”

So, that’s it. We think we did some useful citizen science. We think we made a difference to the people who took part. And we think we made a start on listening to mums and making sure their voices are included in parenting research. But there’s a lot more to do, and a lot of voices that aren’t at the table yet. So if you are a funding body, then think about how you can include the voices of parents with young children. Because parenthood is a big life event, and parents have a lot of questions they need help with.

Over the next two weeks, we’ll be writing new posts every day, based on what we’ve found out from doing this project. These will include our top tips on using Facebook, our top tips on running a family-friendly project, and lots more details on how the project affected our participants. We hope it’s useful.

If you’d like to read more about our evaluation:-
Parenting Science Gang Evaluation Full Report
Parenting Science Gang Evaluation Executive Summary
Parenting Science Gang Evaluation Case Studies