How did doing user-led citizen science change people?
In Parenting Science Gang, parents of small children (overwhelmingly mums) came up with their own research questions and then designed and ran their own experiments to answer them. The questions they came up with were about the things that mattered in their day-to-day lives, caring for a child, and were often things that science had overlooked.
What effect did it have on them to do this? We brought together all the evidence from surveys, interviews, discussion threads and observations, and came up with the following four key themes:-
- Science skills – this included their information-sourcing strategies, the way they evaluated information, specific science knowledge, as well as an understanding of the scientific process.
- Feelings around science – this included seeing scientists as ‘people just like them’, increased confidence in relation to science and a sense of being empowered to use science as a tool for things they need.
- Self actualisation – this included social and emotional outcomes of the project that weren’t specifically related to the science content, particularly intellectual stimulation and feeling part of a community.
- Impact on science – this included finding (and starting to fill) research gaps important to parents in numerous fields of science. And giving scientists new ideas and different perspectives on their work, feedback on their research and plans from a parent perspective, inspiration to do more public engagement, and positive affirmation from members who found their research useful.
Science skills
One of the clearest outcomes for members was an increase in their science-related skills, in several areas – information sourcing, information evaluating, knowledge of specific science findings and experimental techniques, and a greater understanding of the scientific method.
Information sourcing
Before joining PSG, interviewees sought parenting information mainly from the internet, but also from their social networks, and other parenting groups. Since taking part in PSG, they reported looking more critically and thoroughly for information, and using different strategies. Including going to primary sources.
“I’m looking for trustworthy sources…I’m much better informed and… more prepared to be cynical because I’ve seen the contrast between a lot of rubbish… published [in the media] …versus much better information that you can find with a bit more attention”
“It’s been good to be able to ask…‘has anyone got any…good resources?’…there’s a broad mix of people…and they may have access to…papers…that the general public haven’t…or…somebody will come along and ‘this is what you need to search for’”
“I searched your name in the list of accepted proposals for using the ALSPAC data! And I’m really interested in the association between screen time use and anxiety in adolescents.” (PSG member with no science education post A level, during a Q&A with a researcher about ALSPAC)
Evaluating information
Members also said that they now evaluated information differently. They became more critical, they looked for actual scientific papers (which they now felt more qualified to read and understand, more on this later). And they would take things they found back to the group for discussion.
“I heard…some advice…and…researched it…on Google Scholar and…websites that I trusted…I listened to the advice critically…that’s one of the big differences that PSG has made, not just accepting things that I’m being told”
“someone will quote something and you’ll go…‘I thought that was disproved in a study in 2017’ and somebody else will go ‘yes, it was…let me find you the reference’”
Specific knowledge
People appreciated the access to information on parenting topics, as well as other areas of science, direct from experts.
“More factual information and less scaremongering/judgemental advice”
“I gained knowledge in areas that I didn’t have previously”
“The biggest thing I’ve got out of it is taking part in the Q&As, which have been absolutely fascinating and I’ve learned a lot.”
“Mostly from the Q&As. Eg I’ve learned that siblings experiences of their parents are no more similar than those of two unrelated children. And that children spontaneously seek out opportunities to learn about maths.”
“I learned a lot about gut bacteria!”
Scientific process
Participants understood more about the scientific process, how to design experiments, significance, controls, ethics, generally, How Science Works.
“it made the scientific process…a lot more in…my grasp”
“It sounds simple to come up with a question to ask, but it isn’t always a simple matter to find ways to answer it”
“How long it takes to get a paper published! Also just how thorough the research/ testing/analysis needs to be.”
“I learnt a lot about ethics.”
“the whole process has helped me understand how rigorous research is or isn’t so I feel more able to trust / mistrust what I read”
Scientific methods
They also learned a lot about methods in different areas of science (which they may have known little or nothing about before) – from very physical sciences like mass spectrometry to very qualitative research methods in social science.
“I tended to think of science as just including maths, biology, chemistry, physics, but I have learned a lot about collecting social data via questionnaire, ethics, etc.”
“I learnt about how mass spectrometers work, and what it can tell us, and what it can’t.”
Feelings around science
Another very clear theme was a change in participants feelings around science, in several different (but interlinked) ways. They now felt that scientists are ‘people just like them’. Their confidence discussing science, understanding science and accessing science in general increased, (including small but significant numbers returning to education to study science). Members now felt that science was something that they could contribute to, there was a sense of them developing a science identity, and they felt empowered to use science as a tool for things that mattered to them – this empowerment was all the stronger, for happening against a context of many of them feeling disempowered and marginalised by pregnancy and motherhood.
Confidence
Respondents mentioned increased confidence in multiple areas such as their own parenting choices, their contribution to science and their use of science.
“it was very empowering that feeling of…ordinary people, we can be scientists”
“Personally, increased confidence & passion for being involved in research. Also been able to make confident decisions in my parenting choices, particularly in areas where I struggled to find clear answers from existing research.”
“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!”
“I have greater confidence in finding information for myself and speaking with peers around science subjects”
“I do try to find research now if I’m worried about something impacting on my kids – it helps me to see if I should worry or forget about it.”
“It lead to long discussions with my partner, so we both now base our parenting decisions on doing research and interpreting findings.”
“Yes, I am much more confident in my own decisions because I know how to identify reputable sources of information.”
“Shown me that there as an ordinary citizen, I can still get involved in science.”
Scientists are humans
Members saw people like them being scientists and talking to them, person to person, in an informal-feeling setting.
“was nice to have those barriers broken down, they’re…normal people and…talk in a language that we understand…it’s been very nice to see…strong female scientists…rocking their jobs”
“Close contact with leaders in their fields through the Q&As- amazing!”
“I feel that scientists are basically normal people like the rest of us.”
Science identity
People expressed feelings of developing a ‘science identity’.
“This is all awakening my inner scientist. I thought that gene had passed me by.”
“I’ve never been as interested in something like this so I think it will be plaguing my dreams (or nightmares) for some time I’ve been trying to figure out how I can be a scientist for my job since joining this group.”
“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 much so that some members have started access courses or university courses to study science, which they attributed to their involvement in the project.
“Life changing, quite literally. I decided to go back to uni and study neuroscience (no previous science background since school). Its been amazing to help design a study around something I genuinely would like to find out. Speaking with scientists and professionals with the chance to ask them questions has been an amazing opportunity. Thankyou PSG!!”
“I’m…going to do an Access Diploma in science…and…on to…uni next year. I’m…a lot more confident…I [don’t] feel like I’m going to be ridiculed or ignored…I can go into this…field…I’ve always felt…I wouldn’t be intelligent enough”
“now I’m strongly considering applying for a PhD programme!”
Empowered
Members’ experiences during the project need to be seen in the context of how women experience pregnancy and parenthood in our society. There was a clear sense here that mothers felt ignored, sidelined, patronised and not listened to, by society and by many healthcare professionals. Especially during pregnancy and birth. Against this background, being asked what they wanted to know, and given some power to find it out, felt liberating and validating. Many members felt quite passionately about the opportunity to make a difference, especially to areas of medical care where they had had bad experiences.
Context: Our members felt that a lot of the maternity care and child-rearing advice they’d experienced was not evidence-based and that in the transition to parenthood they became isolated and lost their identity. The following quotes illustrate this.
“The way women are treated when pregnant (ime) really beggars belief. It wouldn’t happen in other areas of care.”
“I was constantly told ‘because guideline’ in my first pregnancy, and never given any evidence for it by my consultant.”
“The first person to talk about actual risk factors with numbers etc was the consultant Midwife who I saw around 36 weeks.”
“Soooo many examples of women feeling lied to, not listened too, of maternity care not being evidence based.”
There was a clear feeling that because women are the ones (in most cases) who become the primary care giver for small children, their needs and experiences are not taken seriously.“I think medicine is still paternalistic, women’s issues are ignored, I see it so frequently at work.”
“I don’t think there is a lack.of research/evidence. I think there is a shortage of people paying the blindest bit of notice to it.”
“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
Against this background, mothers responded fervently to the chance to tell their stories, and that someone was finally listening to them.
“I’ve been waiting for this day for six years.”
(Comment from a non-member on our Facebook page post asking for people to tell us about their experiences with HCPs and breastfeeding support.)
Some of the groups (Breastfeeding and healthcare experiences, Big Birthas) specifically did research on mother’s experiences and ‘not feeling listened to’ was a very strong theme.
For many in these groups, talking to others and sharing experiences was transformative – they could now see it wasn’t just an individual experience, but a shared one.
“Mostly that I am not alone and that the way I was treated (as a big birtha) was not OK.”
“Listening to others’ experiences really opened my eyes.”
“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.”
Group members clearly felt very energised that now they were being given the tools and a structure to work together to find evidence and do something about it.“Proud to be part of something that’s results could lead to fairer treatment of bigger mums”
“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.”
But even in the other research projects, people clearly felt emotionally affected by being able to be part of science, and shape it to do something they thought was important.
“Feeling of having contributed to science.”
“It was GREAT to feel involved in science research.”
“Felt I made a difference, could see the full-time scientists were inspired to continue the line of research.”“A chance to be involved in some really cool research, designed by the people it matters to, so hopefully it’ll have impact!”
“Really a feeling of being part of a community of people working for a similar cause. And that cause will have some exciting implications for other parents.”
“It’s a privilege to be involved and I feel proud of playing a little part in furthering understanding of the significant value of breastfeeding. It is currently woefully underplayed.”
“I am passionate about informed choice and the projects we are doing really will inform other parents to make whatever decision fits them.”
Self-actualisation
We’ve included in this theme the social and emotional outcomes of the project, for members, which seemed less directly related to the science content. There was a palpable sense that members loved the chance to have intelligent conversations with other adults, particularly other mums who were going through the same experiences, and to work together as a community to achieve something. Again, this can’t be divorced from the context of mothers with small children feeling isolated, starved of adult interaction and as if they’ve lost their identity. There’s obviously some overlap here with the increased confidence and empowerment subthemes of ‘feelings about science’. These things all worked together and seemed interlinked for our participants too.
Something other than being a mum…
When the accompanying adults were interviewed at the final event, three interviewees saw the group as a way their partners could do something other than parenting; two used the word “outlet”.
“feeling that she’s contributing to something more than childcare which is a big part of her life.”
“it’s a really good outlet for her, something other than being a mum.”
Members too, in survey responses, interviews with Stephanie and in comments in the groups, talked about getting to use their brains, getting to be part of something, and be something other than ‘mummy’ again.
“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 was able to use my brain again, and assert my identity as both a mother and an academic and also learn loads and meet other inspiring people.”
“I’ve made friends and had my faith in myself and abilities restored. I can still use my brain and read academic texts (and science ones at that!) and have intelligent, grown up conversations!”
“Keeping my brain alive while on mat leave.”
“Recognising that while we may be Mums with baby-brain and dubious stains on our clothing, that we’re still capable, intelligent beings and we have a lot to contribute!”
Community
People talked about getting to be part of something, and not just a group to ‘hang out’ in, but actually working together to do something, finding people in the same situation as them and feeling less isolated.
“Gave me a sense of being able to be involved in something real, even if on the fringes, while at home caring for young children.”
There was a sense of a shared mission. Research in happiness science tells us that feeling part of something bigger than yourself, and working with others, makes people happy in a very meaningful sense. Looking after small children can be very isolating.
“I felt like part of a movement!!”
“Bringing like minded, motivated, but undervalued mothers together to buzz off each other and build interesting studies that matter to people.”
“A sense of group passion for the topic and for making changes”
“A sense of joint purpose and community”
“It’s been really lovely to be part of a very similarly minded group of parents who all understand your home situation and can make allowances for babies and toddlers, but still produce some amazing results.”
“the creation of a community of people who have a similar goal and…actively working towards that…is a very different way of participating in a group”
“I’ve rarely come into contact with anyone willing to rock the boat on this topic before and PSG made this happen both online and in real life in a way I never previously believed possible!”
“it all provides a sense that you’re not alone”
Taking ownership of the project
To illustrate this emotional effect of the project, we found a lot of examples of group members taking ownership of the project. Whether this was due to the large emotional and social effect it had had for them, or whether it was due to the DIY ethos we’d tried to foster (or both) is hard to say.
But, for example, members frequently posted our links to their own Facebook feed – for example, transcripts of our Q&As, requests for volunteers to donate milk, or fill in surveys.
Unasked, members asked questions on their own Facebook like, ‘Does anyone know of a cheap conference venue near Manchester?’ when we said we were having trouble finding a venue
When Dr Dovey told the Mealtime Hostage group that he’d got hundreds of questionnaire responses, but it would take him several days to clean the data before he could start analysing it, members asked if there was a way that they could help him clean the data. And then they went ahead and did it, using shared Google Docs.
Another member heard a phone-in on Radio 5 about gender stereotypes and phoned in to appear on the radio and tell them about our research.
As the project was coming to an end, all the groups voted to continue, and people volunteered to admin the groups. 104 members came to a Q&A to decide how to keep the groups going after the project.
Impact on science and scientists
There were two main ways the project impacted on science. Firstly, finding (and starting to fill) research gaps important to parents in numerous fields of science. Secondly, they affected the scientists they interacted with – giving scientists new ideas and different perspectives on their work, feedback on their research and plans from a parent perspective, inspiration to do more public engagement, and positive affirmation from members who found their research useful.
Finding research gaps All groups identified a research question which hasn’t been asked before, and because of their expertise from lived experience they’ve asked questions and designed and run experiments in a different way. These have led to eight papers in press or in preparation and seven conference presentations so far, with at least two more to come.
“it’s parents asking questions other people aren’t”
“Almost single handedly you have opened up a new area of research”
“This is an awesome data set. I have never seen in my career to date a data set like this. This is massive… brilliant… I don’t know anyone in science who has this.”
Affecting scientists
Giving scientists new perspectives on their research, new ideas of research questions or approaches.
“It was great to be able to have a multi-way conversation and get other people’s perspectives on my work.”
“[Some of the] questions that were being asked potentially would make good research questions, as the field is very under-researched.”
“Being part of PSG informs the way I want to conduct science, but also the way I engage with information outside of my own subject area.”
Giving scientists useful feedback or comments on their plans.
For example, during a Q&A about the effects of computer games, Dr Pete Etchells (Bath Spa) invited PSG to contribute to an interdisciplinary meeting looking at screen time research. We were asked to talk about parents’ interests, priorities and concerns about this research. A short-term group was created to share opinions and bring together material for our contribution. PSG representatives then went to the meeting and gave ‘the parent perspective’.
“I cannot state strongly enough how important it was to have your voices there at the meeting. This is an issue that acutely affects parental worries about the effects that technology is having on their kids behaviour, and having people from PSG there with the experience and knowledge of these concerns was crucial to the success of the day. A lot of people mentioned to me that Tamasin’s talk was the most insightful and useful one they went to that day, and it’s really made me think how I can best include parent groups in future academic conferences and workshops.” Dr Pete Etchells
Baby Biome researchers asked PSG to help with shaping the design of their proposed cohort study. Members quizzed the researchers in three Q&As, and discussed the research for two weeks in a special temporary group, giving feedback on draft surveys, recruitment and retention plans, and sharing the questions they’d want the research to be answering.
“You know, for a clinical trial you’re not going really change it after you’ve got [the grant approved], because that’s what the trial is funded and they expect to see the outcomes…So the PPI input needs to go in beforehand.”
Inspiring more public engagement
It gave scientists new ideas of how to communicate their work and encouragement to do more public engagement.
“Really like this initiative, as I am a big believer that real impact from research comes from engaging with the primary users of the knowledge produced.”
“The importance of public engagement has been emphasised to me and I am trying to incorporate this further into my work day.”
Scientists came for us for ideas on how to work with mothers with small children. Prof Amy Brown (Swansea University) contacted us asking for details of how we organised our residential weekend as a funding body turned down a proposal, saying that it wasn’t feasible to get breastfeeding mothers to come to an event.
Feeling appreciated
And scientists got a warm fuzzy feeling, after hearing directly from members how their work had affected them. For example, Dr Maryanne Perrin (University of North Carolina) did a Q&A with us about the composition of breastmilk up to 18 months pp. One member afterwards printed out her journal paper and took it to a GP appointment. “I went in armed with a copy of Perrin et al!” And then emailed Maryanne afterwards to think her. Maryanne replied, “Thanks, that made my day! It’s slow in academia to see the impact of your work (often measured in the number of other papers citing your work). It’s really awesome to know your work is being used at the family level! Thanks for sharing this. :)”
Conclusion
The outcomes of this project clearly involved an increase in science capital for members – their science knowledge and understanding increased and they developed a sense of themselves as having a science identity and confidence in relation to science. But the ‘extreme citizen science’ approach had outcomes that clearly went beyond that. This wasn’t a project in a traditional ‘science communication’ mould, which just equipped them with some useful knowledge.
Members felt emotionally and intellectually engaged, they felt empowered. Science became a tool for them to assert themselves in the world and, in many cases, to right wrongs on behalf of themselves and others.
This project is indivisible from the experiences of becoming a mother, and primary care-giver for a small child. To engage this audience in the way that we have, we had to shape the project around the practicalities of motherhood, and around the pressing needs for information about pregnancy, birth and childrearing that women have at this life stage.
This is an audience who are often overlooked (other than as the people who might bring, e.g. a small child to a child-orientated event at a science centre). But they are an audience with emotional and social needs, and informational needs which biomedicine (broadly constituted) should be answering. By consciously basing the project around the needs of mothers, we have been able to empower them to help shape future health research. This benefits both them personally and directly (in feeling listened to and self-actualised) and health research, by spotting missed opportunities, making it more informed about the needs of its publics, and creating more inclusive and people-centred research practice.
