Episode 4
S10E4: Engaging children and communities for lung health - An octopus of methods!
In this week's episode, we are talking to the Tupumue Project, who applied creative participatory methods alongside clinical data to understand how many children, in two communities in Nairobi, Kenya have lung problems, and to explore children's experiences of lung problems and air pollution. The project used a variety of creative research methods including drawings, drama, walking interviews with go pros, comics, graffiti and others. They even engaged children in co- analysis and theme development.
Co-host for this episode, Dr. Hellen Meme, told us more about the programme;
“The choice of the word “Tupumue” (meaning “lets breathe”!) as an identity of the program was because breathing is a function important to all. The Tupumue programme was a complex undertaking considering the broadness of the subject that was covered, in regard to establishing the burden of non-communicable lung diseases in school children and risk factors in both an informal and formal community context. The necessary skill pool had to be wide to achieve this and hence the broad collaboration involving a multidisciplinary team derived from several North and South institutions. For everyone to own the study, we held consultative meetings through which we established a niche for everyone to participate. We are in the process of widely disseminating our study findings and are currently sharing our results with all stakeholders including participating schools and the community in order to get their views on the findings before we engage policy makers”.
This episode features:
Dr. Hellen Meme (co-host) - Chief Research Scientist, Kenya Medical Research Institute (KEMRI)
Hellen Meme’s research work spans over 30 years and involves health and communities. Her research area of interest is in respiratory diseases with bias towards conducting research in congregate communities. This necessitates a broad skill base as well as innovation in planning approaches appropriate for project implementation. In this regard, engagement of community and other stakeholders is key.
Dr Sarah West - Centre Director and Senior Research Fellow, Stockholm Environment Institute, University of York
Sarah has been using citizen science approaches since she began work at SEI York in 2008, working on topics ranging from air pollution and biodiversity through to parenting and food waste. All her work uses citizen science approaches to engage a diverse range of people with research. She uses this approach because she believes that well designed projects can have huge benefits for advancing research and for making a difference for all those involved in projects. She also conducts research around the method of citizen science, looking at who is and isn’t participating in projects, and evaluating projects’ efficacy.
Relevant links:
https://www.sei.org/featured/citizen-science-month/
Fred Orina - Senior Research Scientist, Kenya Medical Research Institute (KEMRI)
Fred’s interest is research implementation. He has 10 years’ experience in coordinating the implementation of human health research, with a focus on lung health studies in both static and nomadic communities. This involves liaising with communities and diverse stakeholders. With a scientific background, he acts as the interlink between the community, researchers, and the sponsor.
Professor Graham Devereux - Professor of Respiratory Medicine, Liverpool School of Tropical Medicine
Graham is a Professor of Respiratory Medicine with research interests in the antenatal influences on the life course of airways disease and clinical trials in COPD. He is also an Honorary Consultant at Aintree University Hospital and spent 2020-2022 managing patients with COVID-19.
His research into the life-course of airways diseases such as asthma and COPD has involved studies of large numbers of pregnant women, children and adults, originally in the UK, since his move to the Liverpool School of Tropical Medicine his work has involved large numbers of children and adults in Kenya and Malawi.
Follow Connecting Citizens to Science on your usual podcast platform or YouTube to hear more about the methods and approaches that researchers apply to connect with communities and co-produce solutions to global health challenges. The series covers wide ranging topics such as TB, NTD’s, antenatal and postnatal care, mental wellbeing and climate change, all linked to health.
If you would like your own project or programme to feature in an episode, get in touch with producers of Connecting Citizens to Science, the SCL Agency.
Transcript
Hello listeners and welcome to the Connecting Citizens to Science Podcast.
Kim Ozano:A podcast that explores methods and approaches that are used in research and science to connect communities and make
Kim Ozano:In this week's episode, we are talking to the Tupumue Project who aim to understand how children in two
Kim Ozano:And to also explore children's experiences of lung problems in air pollution.
Kim Ozano:They really drew on creative methods to do this and talk about it throughout the episode.
Kim Ozano:They used drawings with children to identify what was considered as either good air or bad air.
Kim Ozano:They conducted something called walking interviews with GoPros and air monitors with local community groups and people.
Kim Ozano:They even engaged children in co analysis and theme development.
Kim Ozano:They talk about how videos, comics, graffiti was used to communicate findings back to communities and by
Kim Ozano:Finally, we hear how all of this contributed to understanding the priorities needs of communities from communities themselves.
Kim Ozano:Enjoy the episode
Kim Ozano:Hello listeners and welcome to the Connecting Citizens to Science Podcast.
Kim Ozano:In this week's episode, we will be hearing about lung diseases, asthma, and chronic obstructive pulmonary disease, or COPD,
Kim Ozano:So first of all, let's meet our three guests.
Kim Ozano:Sarah West, welcome to the podcast.
Sarah West:Hi, Kim.
Sarah West:Thanks for having me.
Sarah West:I'm Sarah, I'm director of the Stockholm Environment Institute, which is at the University of York, and today is very frosty.
Fred Orina:I am Fred Orina.
Fred Orina:I work at the Kenya Medical Research Institute as a research scientist.
Fred Orina:I was the project manager for the Tupumue study.
Graham Devereux:Hi, I'm Graham Devereux.
Graham Devereux:I work at the Liverpool School of Tropical Medicine.
Graham Devereux:I'm a chest doctor by trade and I have a research interest in how early life and the environment influences
Kim Ozano:Wonderful.
Kim Ozano:Thank you very much.
Kim Ozano:Let's meet our co-host.
Kim Ozano:As always, I have a wonderful new co-host with me.
Kim Ozano:Hellen Meme, welcome to the podcast.
Kim Ozano:Tell us a bit about yourself, and also introduce this wonderful project we're going to be hearing about today.
Hellen Meme:Hello everyone.
Hellen Meme:My name is Hellen Meme.
Hellen Meme:I work for the Kenya Medical Research Institute as a Chief research officer.
Hellen Meme:My business is to carry out research in human health.
Hellen Meme:And this particular study, um, is a study that we carried out to assess the burden of chronic non-communicable lung
Hellen Meme:We embarked on our journey to find out what the burden of chronic lung diseases is in these two communities, and to
Hellen Meme:We intended to learn what the early life impact as well as the environment has; what impact the two have in the non-communicable
Kim Ozano:Thank you very much, and I think we will be learning about the methods that you use to engage children throughout the
Kim Ozano:Could you just paint us a picture of those two study sites?
Hellen Meme:The informal settlement is basically what we commonly refer to as slums and uh, this
Hellen Meme:These are areas where people live and actually are associated with people on the low earning side of the population.
Hellen Meme:Then in comparison to this, we had a more affluent neighborhood, which is planned with all social amenities, so to speak, and
Hellen Meme:So that is the context in which we looked at the children living in these two different communities.
Kim Ozano:That sounds great, so the comparison for you in this project is really important by the sound of it.
Kim Ozano:Well, I will let you engage with our guests.
Kim Ozano:Let's hear more about it.
Hellen Meme:Thank you very much.
Hellen Meme:I'll request our first guest, Professor Graham, to highlight , how we came to where we are in terms of the conception of
Graham Devereux:Hi, I started at Liverpool School of Tropical Medicine in 2018, and within a couple of weeks I was sent out to
Graham Devereux:She and I met up in a hotel one evening before dinner, and we basically came up with this idea of doing a comparison study.
Graham Devereux:This is what I've done in the past is comparison studies and, we could also build on the work from
Graham Devereux:So whole idea of this is we're looking at children because we know in Africa there's a huge COPD burden in adults.
Graham Devereux:We know that most of the factors that are increasing risk of COPD are established during childhood.
Graham Devereux:That's why we wanted to look at children.
Graham Devereux:We wanted to see whether, their lung disease patterns are the same as what we've seen in adults.
Graham Devereux:We wanted to do the comparison because nobody's ever looked at a study of a slum before to see
Graham Devereux:People have said, oh, yes, there is, but they've not actually done the study, so this was the first study to actually
Graham Devereux:It's the first ever study to have done this, and then Helen told me that the ladies in, uh, Kenya have something
Graham Devereux:This was like gold dust to me because these are sort of studies we've been doing in the UK looking at, you know, all
Graham Devereux:I just took this with both hands and we said, "great, let's get all the women to take part in
Graham Devereux:We could actually look to see what the babies were like at birth influenced whether they get asthma later in life.
Hellen Meme:Thank you very much Graham.
Hellen Meme:Now that we know little where it all started, I think it's important that now we get Fred to tell us how the feel was on the ground and
Fred Orina:The Tupumue study's quite a unique study.
Fred Orina:I don't know when they were sitting to think about, uh, this study, why they had put so many, uh, octopus tentacles in it.
Fred Orina:We had a social arm, we had a sensitisation arm, we had a clinical arm, we had exposure arm, which
Fred Orina:When we look at the different arms, we had to do, uh, 200 homes for exposure.
Fred Orina:We had to do around, uh, 40 walking interviews.
Fred Orina:It was really something which really required a lot of uh, coordination.
Fred Orina:After getting all those permissions, we uh, started the consenting process, anyway, before that,
Kim Ozano:An octopus, what a great analogy.
Kim Ozano:I have definitely worked on programmes that have felt that way too.
Kim Ozano:I think when we work in multidisciplinary settings, it’s often what it can look like in practice as well.
Kim Ozano:So can you tell me a little bit more; what did the sensitisation arm look like in practice?
Fred Orina:There was an elaborate sensitisation whereby the whole community had to be made aware of the study.
Fred Orina:We brought the community to give their views again, uh, to the proposal as, uh, was how it was going to be implemented, and the
Fred Orina:When the children now came to school, they had some idea of how the study is going to be carried out, and here
Fred Orina:The installation team came to the schools, did their drama, uh, so that the children can really understand what was ahead of them.
Fred Orina:After the concepts were gotten, the assents were gotten from the children, then the real activities started.
Fred Orina:The real activities were, uh, the clinical activities and here the children had to undergo several, uh, activities,
Fred Orina:Then they did some spirometry testing, which was to measure their lung function.
Fred Orina:Thereafter, they became now the ambassadors for the study.
Fred Orina:This really helped in making the study a success.
Fred Orina:The study to the community was the air quality measurement arm.
Fred Orina:This air quality measurement arm was actually carried out by field workers from these different communities.
Fred Orina:Uh, Field workers had to go get the randomly selected families uh, in the, in the project, and then go visit
Fred Orina:So at home, the families were actually a little bit, um, curious on the gadgets, because the gadgets were,
Fred Orina:The other component was for the, uh, uh, walking interviews whereby the field workers carry this, uh, air quality measurement
Fred Orina:So with a good sensitisation practice, the community really accepted this project.
Hellen Meme:Thank you, Fred, I would request Sarah maybe to, to give her, in her input into what Fred has just discussed and, uh,
Sarah West:My role in the project was leading on the qualitative side of the project, and there were three main elements to that.
Sarah West:The first was story making with the children.
Sarah West:So as Fred described, there was this kind of long sensitisation process.
Sarah West:We had amazing community sensitisation champions who went in and they developed a song and they developed a mural, and they all
Sarah West:It meant that the children were aware about it and then it was much easier to consent the parents as part of that process, um,
Sarah West:The storytelling team went in and they got children to draw pictures of, um, what they like doing when they're outside of school.
Sarah West:That was their first activity, just to get them started with you know, this weird activity, you know, like drawing.
Sarah West:Then they started the next activity which was, um, actually much more focusing on their breath.
Sarah West:It was focusing on do you or anyone you know, have any lung issues?
Sarah West:And they drew pictures around that.
Sarah West:Then they also drew pictures around what they saw on their way to school.
Sarah West:They drew pictures of things like where they felt the air was clean and where they felt the air was dirty.
Sarah West:We've got really fantastic drawings, um, of those from the two communities.
Sarah West:This is really exciting for me.
Sarah West:All my research uses citizen science approaches in it, but often the participants are only involved in the
Sarah West:We did an exercise where we got them to start coding the drawings that they'd done as a group.
Sarah West:What could they see in those drawings?
Sarah West:When they were drawing clean air pictures, what sort of things did they show?
Sarah West:So, you know, that was trees and rivers and the moon actually came up quite often in those drawings and the sun, um, as the clean air.
Sarah West:When they were drawing the dirty air, the children decided that actually the types of categories that they wanted, how they
Sarah West:So that was the most common theme in the drawings and smoke coming from rubbish, um, burning.
Sarah West:Smoke coming from cooking, smoke coming from people, um, smoking and also from vehicles.
Sarah West:The third element, as Fred described, was these walking interviews, which is where we got people to walk around with a GoPro camera
Sarah West:We've got really nice, um, videos of those two different spaces as well as the air quality measurements from those spaces as well.
Sarah West:In terms of safeguarding, back to your question, Hellen, what we did there was we made sure that our researchers were always
Hellen Meme:Thank you Sarah.
Hellen Meme:Before we move on, ethics is always an issue.
Hellen Meme:Ethical issues always come up, especially when a study like this is undertaken within the community.
Hellen Meme:I would request, uh, Graham to kind of put us to speed on how they're, the ethical issues during this study were handled.
Hellen Meme:This is really an issue that everybody grapples within a big study like this.
Graham Devereux:Yeah.
Graham Devereux:What you have to remember here is we're essentially asking parents to give us information about their children.
Graham Devereux:A lot of parents, talking about a thousand parents from Mukuru, a thousand parents from Buruburu, we're actually
Graham Devereux:We're asking them to get the children to do some blowing tests.
Graham Devereux:These are things that the children don't have to do, but we're asking for permission to do it.
Graham Devereux:Firstly, you have to go through what we call governance, which is to get permissions from Ministry of Health, Ministry of
Graham Devereux:That's the permissions, but the most important thing is that the parents are actually told what we would like to do to the children.
Graham Devereux:The children went home with an information sheet for the parent, and it explained in English and in Swahili what we would like to do.
Graham Devereux:The parents were told that they didn't have to take part.
Graham Devereux:It was completely voluntary.
Graham Devereux:They had the opportunities to ask the questions and if they're happy for their children to be involved, they gave their written consent.
Graham Devereux:Then the parents would give us the information about what the children's respiratory symptoms were, how they lived.
Graham Devereux:When we came to actually do the blowing test, we actually asked the children, " Do you actually want to help us with this study?".
Graham Devereux:"Do you want to actually do these blowing tests?"
Graham Devereux:and they signed a consent, what they call assent.
Graham Devereux:One of, what I call the creatives, was an artist.
Graham Devereux:He did some fantastic cartoons so that when we were asking the children for their permission there
Graham Devereux:The children knew what was going to happen because they'd seen puppet shows about what happened to Billy
Graham Devereux:Billy the puppet, had to do some blowing tests so the children knew exactly what was going on.
Graham Devereux:There'd been lots of parades through the communities explaining what Tupumue was about.
Graham Devereux:The families, the parents, knew what they were going to be approached, they knew what the study was about, the children
Graham Devereux:They weren't frightened by anything.
Graham Devereux:Not only did we do a puppet show for Billy on his day out to take part in the study before Covid, he had one post Covid where Billy had
Graham Devereux:It's not only about getting the permissions, it's about getting the parents and the children to want to take part.
Graham Devereux:Part of that is, it's very important if they've taken part in a study to actually get the findings of the study.
Graham Devereux:We know from our engagement with the communities that they strongly are worried about exposure to pollution so the
Kim Ozano:It's such an engaging conversation, we're really interested in the methods here.
Kim Ozano:Sarah, I wonder if you could, tell me what value did these methods add?
Kim Ozano:And when you came to bring the different methods together, were they showing you different things depending on whether
Kim Ozano:How did that all come together?
Sarah West:What the different methods show us is complimentary to each other.
Sarah West:So I think they're showing us different sides of the same picture.
Sarah West:The same things we get that Graham has just described about the different sources of pollution in the different
Sarah West:I think the reason we decided to use these methods is actually, Graham mentioned right at the beginning in his introduction,
Sarah West:Um, and we found that there was such enthusiasm in the community for these methods.
Sarah West:These are the way that people in the community communicate.
Sarah West:They don't communicate by, um, you know, listening to presentations or anything like that.
Sarah West:The murals, the graffiti and things, that is how they get the messages across.
Sarah West:When Graham and his team approached us and said, look, do you wanna get involved?
Sarah West:We were like, yeah, absolutely.
Sarah West:There was so much more we could do and we really liked the idea of having the kind of academic rigor that comes from a comparison
Graham Devereux:For the dissemination, we've got boring stuff, which is presentations at meetings and papers.
Graham Devereux:The more interesting stuff, has come from the fact that we've been filming from start to finish.
Graham Devereux:There's been filming done by Kenyan filmmakers who've filmed at Tupumue.
Graham Devereux:So there'll be a Tupumue film, which will be in English and in Swahili.
Graham Devereux:That'll be the basis for a lot of our dissemination activities, both to the scientific community and to the people of Nairobi.
Graham Devereux:Hellen is going to have a series of, dissemination meetings with teachers, the communities, uh, we're
Graham Devereux:So the film is what we're really going to be doing most of the dissemination with.
Graham Devereux:There is a 37 minute film, which has got music from the choir, singing, when we had our community engagement event.
Graham Devereux:We've got the, uh, the Tupumue song on it.
Graham Devereux:It gives the basic outline of what the study's about, the way it was conducted and the results.
Graham Devereux:The most important thing is we feed back to the communities.
Graham Devereux:The presenter of the Tupumue film is actually Peris, who's one of the Tupumue champions, who's known to the community in the
Graham Devereux:We take this very seriously, in disseminating back.
Graham Devereux:We're also disseminating to what we call our policymakers.
Graham Devereux:We're hoping to get to the Ministry of Health, Ministry of Education, so we can tell the Ministry of Education, the
Graham Devereux:We're also, we've now got funding for what we're calling a dissemination event where there's a big
Graham Devereux:We're getting scientists together to tell them about the study, but we're also getting members
Graham Devereux:They'll be doing some of the presentations about what Mukuru is like, what Buruburu is like, what they did in the study.
Graham Devereux:They're going to tell us about sensitisation.
Graham Devereux:Hopefully we're going to have some drawing happening, we may even have some dancing in the aisles.
Graham Devereux:It's going to be a dissemination event, which is not only scientific, but it's the community and
Graham Devereux:One of the real reasons for the dissemination events is that we want the communities of Buruburu and
Graham Devereux:They were the ones that told us they were worried about pollution.
Graham Devereux:They wanted us to look at pollution.
Graham Devereux:They said, without any data, the Kenyan government says there isn't a problem.
Graham Devereux:So we are now providing the data, but we would like the community to tell us what to do next.
Graham Devereux:Would they like us to start working on trying to get rid of mosquito coils?
Graham Devereux:Would they like us to start getting children diagnosed?
Graham Devereux:Would they like us to start getting children treated?
Graham Devereux:Or do we need to go and speak to the Kenyan government to get improvements in pollution?
Graham Devereux:They've told us what to do.
Graham Devereux:They've helped us do the study, but they're going to tell us what they would like us to do next, which I think is very important.
Kim Ozano:I can tell from this project that the values of co-production didn't just come at the end.
Kim Ozano:They were all the way through right from the beginning in the participatory methods that you've chosen, right down to engaging
Kim Ozano:I think this octopus that you've created of different methods and different disciplines is wonderful.
Kim Ozano:I can imagine you've got a lot of learning, so what advice would you have in 30 seconds?
Kim Ozano:What advice would you have for others who want to engage with communities to the level that you have in this project?
Fred Orina:Whoever wants to do this kind of a study, uh, a lot of planning is really required.
Fred Orina:We plan for the knowns and we also plan for the unknowns because, uh, like Covid struck, we had no plans for a pandemic.
Fred Orina:And, uh, we should actually use the community in terms of, uh, the data collection themselves, because we
Kim Ozano:Perfect.
Kim Ozano:Thank you very much.
Kim Ozano:Sarah, please piece of advice;
Sarah West:Aside from everybody needs a Fred in their project, which would be my top tip, my second tip is, um,
Sarah West:We involved them right from when we were writing the bid, which would be my top tip.
Kim Ozano:Thank you very much, Graham.
Graham Devereux:I think I've got two tips.
Graham Devereux:Firstly, if you've got the community on board, you could be very, very ambitious.
Graham Devereux:The other thing is I hadn't got a clue what was going on with these creatives and what they're up to, and I just let them do it.
Graham Devereux:Just listen to what you're told.
Kim Ozano:Thank you very much.
Kim Ozano:Hellen, one piece of advice to wrap us up?
Hellen Meme:One thing I really learned from this study, which was very, very unique, I've had a long history of
Kim Ozano:Thank you so much; so plan for the known one and the unknown, lots of teamwork, engage
Kim Ozano:That's a wonderful end to the podcast.
Kim Ozano:Thank you so much for our guests and our wonderful co-host and to our listeners as always, thank you for joining us.
Kim Ozano:Please do like, rate, share, and subscribe.
Kim Ozano:Without your support, we couldn't continue with this podcast.
Kim Ozano:Thank you very much for listening and, uh, stay with us for our next episode.
