Hello listeners and welcome to the Connecting Citizens to Science Podcast.

A podcast that explores methods and approaches that are used in research and science to connect communities and make

In this week's episode, we are talking to the Tupumue Project who aim to understand how children in two

And to also explore children's experiences of lung problems in air pollution.

They really drew on creative methods to do this and talk about it throughout the episode.

They used drawings with children to identify what was considered as either good air or bad air.

They conducted something called walking interviews with GoPros and air monitors with local community groups and people.

They even engaged children in co analysis and theme development.

They talk about how videos, comics, graffiti was used to communicate findings back to communities and by

Finally, we hear how all of this contributed to understanding the priorities needs of communities from communities themselves.

Enjoy the episode

Hello listeners and welcome to the Connecting Citizens to Science Podcast.

In this week's episode, we will be hearing about lung diseases, asthma, and chronic obstructive pulmonary disease, or COPD,

So first of all, let's meet our three guests.

Sarah West, welcome to the podcast.

Hi, Kim.

Thanks for having me.

I'm Sarah, I'm director of the Stockholm Environment Institute, which is at the University of York, and today is very frosty.

I am Fred Orina.

I work at the Kenya Medical Research Institute as a research scientist.

I was the project manager for the Tupumue study.

Hi, I'm Graham Devereux.

I work at the Liverpool School of Tropical Medicine.

I'm a chest doctor by trade and I have a research interest in how early life and the environment influences

Wonderful.

Thank you very much.

Let's meet our co-host.

As always, I have a wonderful new co-host with me.

Hellen Meme, welcome to the podcast.

Tell us a bit about yourself, and also introduce this wonderful project we're going to be hearing about today.

Hello everyone.

My name is Hellen Meme.

I work for the Kenya Medical Research Institute as a Chief research officer.

My business is to carry out research in human health.

And this particular study, um, is a study that we carried out to assess the burden of chronic non-communicable lung

We embarked on our journey to find out what the burden of chronic lung diseases is in these two communities, and to

We intended to learn what the early life impact as well as the environment has; what impact the two have in the non-communicable

Thank you very much, and I think we will be learning about the methods that you use to engage children throughout the

Could you just paint us a picture of those two study sites?

The informal settlement is basically what we commonly refer to as slums and uh, this

These are areas where people live and actually are associated with people on the low earning side of the population.

Then in comparison to this, we had a more affluent neighborhood, which is planned with all social amenities, so to speak, and

So that is the context in which we looked at the children living in these two different communities.

That sounds great, so the comparison for you in this project is really important by the sound of it.

Well, I will let you engage with our guests.

Let's hear more about it.

Thank you very much.

I'll request our first guest, Professor Graham, to highlight , how we came to where we are in terms of the conception of

Hi, I started at Liverpool School of Tropical Medicine in 2018, and within a couple of weeks I was sent out to

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.

This is what I've done in the past is comparison studies and, we could also build on the work from

So whole idea of this is we're looking at children because we know in Africa there's a huge COPD burden in adults.

We know that most of the factors that are increasing risk of COPD are established during childhood.

That's why we wanted to look at children.

We wanted to see whether, their lung disease patterns are the same as what we've seen in adults.

We wanted to do the comparison because nobody's ever looked at a study of a slum before to see

People have said, oh, yes, there is, but they've not actually done the study, so this was the first study to actually

It's the first ever study to have done this, and then Helen told me that the ladies in, uh, Kenya have something

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

I just took this with both hands and we said, "great, let's get all the women to take part in

We could actually look to see what the babies were like at birth influenced whether they get asthma later in life.

Thank you very much Graham.

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

The Tupumue study's quite a unique study.

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.

We had a social arm, we had a sensitisation arm, we had a clinical arm, we had exposure arm, which

When we look at the different arms, we had to do, uh, 200 homes for exposure.

We had to do around, uh, 40 walking interviews.

It was really something which really required a lot of uh, coordination.

After getting all those permissions, we uh, started the consenting process, anyway, before that,

An octopus, what a great analogy.

I have definitely worked on programmes that have felt that way too.

I think when we work in multidisciplinary settings, it’s often what it can look like in practice as well.

So can you tell me a little bit more; what did the sensitisation arm look like in practice?

There was an elaborate sensitisation whereby the whole community had to be made aware of the study.

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

When the children now came to school, they had some idea of how the study is going to be carried out, and here

The installation team came to the schools, did their drama, uh, so that the children can really understand what was ahead of them.

After the concepts were gotten, the assents were gotten from the children, then the real activities started.

The real activities were, uh, the clinical activities and here the children had to undergo several, uh, activities,

Then they did some spirometry testing, which was to measure their lung function.

Thereafter, they became now the ambassadors for the study.

This really helped in making the study a success.

The study to the community was the air quality measurement arm.

This air quality measurement arm was actually carried out by field workers from these different communities.

Uh, Field workers had to go get the randomly selected families uh, in the, in the project, and then go visit

So at home, the families were actually a little bit, um, curious on the gadgets, because the gadgets were,

The other component was for the, uh, uh, walking interviews whereby the field workers carry this, uh, air quality measurement

So with a good sensitisation practice, the community really accepted this project.

Thank you, Fred, I would request Sarah maybe to, to give her, in her input into what Fred has just discussed and, uh,

My role in the project was leading on the qualitative side of the project, and there were three main elements to that.

The first was story making with the children.

So as Fred described, there was this kind of long sensitisation process.

We had amazing community sensitisation champions who went in and they developed a song and they developed a mural, and they all

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,

The storytelling team went in and they got children to draw pictures of, um, what they like doing when they're outside of school.

That was their first activity, just to get them started with you know, this weird activity, you know, like drawing.

Then they started the next activity which was, um, actually much more focusing on their breath.

It was focusing on do you or anyone you know, have any lung issues?

And they drew pictures around that.

Then they also drew pictures around what they saw on their way to school.

They drew pictures of things like where they felt the air was clean and where they felt the air was dirty.

We've got really fantastic drawings, um, of those from the two communities.

This is really exciting for me.

All my research uses citizen science approaches in it, but often the participants are only involved in the

We did an exercise where we got them to start coding the drawings that they'd done as a group.

What could they see in those drawings?

When they were drawing clean air pictures, what sort of things did they show?

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.

When they were drawing the dirty air, the children decided that actually the types of categories that they wanted, how they

So that was the most common theme in the drawings and smoke coming from rubbish, um, burning.

Smoke coming from cooking, smoke coming from people, um, smoking and also from vehicles.

The third element, as Fred described, was these walking interviews, which is where we got people to walk around with a GoPro camera

We've got really nice, um, videos of those two different spaces as well as the air quality measurements from those spaces as well.

In terms of safeguarding, back to your question, Hellen, what we did there was we made sure that our researchers were always

Thank you Sarah.

Before we move on, ethics is always an issue.

Ethical issues always come up, especially when a study like this is undertaken within the community.

I would request, uh, Graham to kind of put us to speed on how they're, the ethical issues during this study were handled.

This is really an issue that everybody grapples within a big study like this.

Yeah.

What you have to remember here is we're essentially asking parents to give us information about their children.

A lot of parents, talking about a thousand parents from Mukuru, a thousand parents from Buruburu, we're actually

We're asking them to get the children to do some blowing tests.

These are things that the children don't have to do, but we're asking for permission to do it.

Firstly, you have to go through what we call governance, which is to get permissions from Ministry of Health, Ministry of

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.

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.

The parents were told that they didn't have to take part.

It was completely voluntary.

They had the opportunities to ask the questions and if they're happy for their children to be involved, they gave their written consent.

Then the parents would give us the information about what the children's respiratory symptoms were, how they lived.

When we came to actually do the blowing test, we actually asked the children, " Do you actually want to help us with this study?".

"Do you want to actually do these blowing tests?"

and they signed a consent, what they call assent.

One of, what I call the creatives, was an artist.

He did some fantastic cartoons so that when we were asking the children for their permission there

The children knew what was going to happen because they'd seen puppet shows about what happened to Billy

Billy the puppet, had to do some blowing tests so the children knew exactly what was going on.

There'd been lots of parades through the communities explaining what Tupumue was about.

The families, the parents, knew what they were going to be approached, they knew what the study was about, the children

They weren't frightened by anything.

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

It's not only about getting the permissions, it's about getting the parents and the children to want to take part.

Part of that is, it's very important if they've taken part in a study to actually get the findings of the study.

We know from our engagement with the communities that they strongly are worried about exposure to pollution so the

It's such an engaging conversation, we're really interested in the methods here.

Sarah, I wonder if you could, tell me what value did these methods add?

And when you came to bring the different methods together, were they showing you different things depending on whether

How did that all come together?

What the different methods show us is complimentary to each other.

So I think they're showing us different sides of the same picture.

The same things we get that Graham has just described about the different sources of pollution in the different

I think the reason we decided to use these methods is actually, Graham mentioned right at the beginning in his introduction,

Um, and we found that there was such enthusiasm in the community for these methods.

These are the way that people in the community communicate.

They don't communicate by, um, you know, listening to presentations or anything like that.

The murals, the graffiti and things, that is how they get the messages across.

When Graham and his team approached us and said, look, do you wanna get involved?

We were like, yeah, absolutely.

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

For the dissemination, we've got boring stuff, which is presentations at meetings and papers.

The more interesting stuff, has come from the fact that we've been filming from start to finish.

There's been filming done by Kenyan filmmakers who've filmed at Tupumue.

So there'll be a Tupumue film, which will be in English and in Swahili.

That'll be the basis for a lot of our dissemination activities, both to the scientific community and to the people of Nairobi.

Hellen is going to have a series of, dissemination meetings with teachers, the communities, uh, we're

So the film is what we're really going to be doing most of the dissemination with.

There is a 37 minute film, which has got music from the choir, singing, when we had our community engagement event.

We've got the, uh, the Tupumue song on it.

It gives the basic outline of what the study's about, the way it was conducted and the results.

The most important thing is we feed back to the communities.

The presenter of the Tupumue film is actually Peris, who's one of the Tupumue champions, who's known to the community in the

We take this very seriously, in disseminating back.

We're also disseminating to what we call our policymakers.

We're hoping to get to the Ministry of Health, Ministry of Education, so we can tell the Ministry of Education, the

We're also, we've now got funding for what we're calling a dissemination event where there's a big

We're getting scientists together to tell them about the study, but we're also getting members

They'll be doing some of the presentations about what Mukuru is like, what Buruburu is like, what they did in the study.

They're going to tell us about sensitisation.

Hopefully we're going to have some drawing happening, we may even have some dancing in the aisles.

It's going to be a dissemination event, which is not only scientific, but it's the community and

One of the real reasons for the dissemination events is that we want the communities of Buruburu and

They were the ones that told us they were worried about pollution.

They wanted us to look at pollution.

They said, without any data, the Kenyan government says there isn't a problem.

So we are now providing the data, but we would like the community to tell us what to do next.

Would they like us to start working on trying to get rid of mosquito coils?

Would they like us to start getting children diagnosed?

Would they like us to start getting children treated?

Or do we need to go and speak to the Kenyan government to get improvements in pollution?

They've told us what to do.

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.

I can tell from this project that the values of co-production didn't just come at the end.

They were all the way through right from the beginning in the participatory methods that you've chosen, right down to engaging

I think this octopus that you've created of different methods and different disciplines is wonderful.

I can imagine you've got a lot of learning, so what advice would you have in 30 seconds?

What advice would you have for others who want to engage with communities to the level that you have in this project?

Whoever wants to do this kind of a study, uh, a lot of planning is really required.

We plan for the knowns and we also plan for the unknowns because, uh, like Covid struck, we had no plans for a pandemic.

And, uh, we should actually use the community in terms of, uh, the data collection themselves, because we

Perfect.

Thank you very much.

Sarah, please piece of advice;

Aside from everybody needs a Fred in their project, which would be my top tip, my second tip is, um,

We involved them right from when we were writing the bid, which would be my top tip.

Thank you very much, Graham.

I think I've got two tips.

Firstly, if you've got the community on board, you could be very, very ambitious.

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.

Just listen to what you're told.

Thank you very much.

Hellen, one piece of advice to wrap us up?

One thing I really learned from this study, which was very, very unique, I've had a long history of

Thank you so much; so plan for the known one and the unknown, lots of teamwork, engage

That's a wonderful end to the podcast.

Thank you so much for our guests and our wonderful co-host and to our listeners as always, thank you for joining us.

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