Hello listeners.

The connecting citizens to science podcast is a global health podcast.

That means that we try to reach voices in different countries, in different

contexts and the sound quality can sometimes be compromised . So we

recommend for this episode, which was recorded in Liberia that you do

read alongside using the transcript so that you can really understand

and hear these very important voices that are represented in this episode.

You can find the transcripts within the blurb, and at the bottom of the Liverpool

school of tropical medicine podcast site.

Thank you for listening and enjoy the episode.

Hello listeners and welcome to the connecting citizens to science podcast.

I'm Dr.

Kim Ozano and together with a selection of co-host from around the world, we discuss

the ways in which people and communities connect with research and science.

We hear from patients and survivors, health workers, policy makers, scientists,

and implementing research organizations about the methods and approaches that

they apply to co-produced knowledge to address current global health challenges.

Thank you for listening and onto this week's episode.

Hello listeners and welcome back or welcome for the first time to the

connecting citizens to science podcast.

This month's podcast series will be exploring mental wellbeing amongst people

affected by chronic health conditions.

We will be hearing about examples from neglected tropical

disease research or NTDs.

These are a set of communicable diseases that affect the poorest

and the most marginalized.

And on top of that receive limited resources in comparison to other

diseases like TB or HIV, for example, hence their term of being neglected.

Throughout this series.

We'll be talking about how different stakeholders from the NTD community

and other chronic conditions work together with communities and people

who have lived experience , so we can better understand their health issues.

We have two guests today as Satta is a community health service supervisor

in Lofa Liberia and Wenjor is a neglected tropical disease focal person.

Satta and Wenjor work in communities that are more than five kilometers from the

health facilities and they are a peer researcher within the redress program.

The REDRESS program is working towards addressing stigma,

discrimination and improving mental health services for people affected

by neglected tropical diseases.

But before we begin, let's talk to our co-host Tosin Adekeye.

How are you today?

And tell us a bit about yourself.

Hi Kim.

I'm fine.

Thank you very much.

And it's good to be here.

Um, I am Tosin Adekeye, I have a PhD in psychology and I work with the

department of mental health here in Northern Nigeria, the Ahmadu Bello

University Teaching hospital and, I've also worked primarily research in

participatory research, particularly among, neglected tropical diseases.

Most recently I also work with the Institute for development studies,

where we're developing a wellbeing tool for children and parents with

disability and it's good to be here.

Thank you.

Thank you very much Tosin it sounds like you have a wealth of experience and I

can imagine working with children is quite challenging and very interesting as well.

So hopefully we'll get to hear about that at some point.

Thank you Tosin Im going to ask you for a definition early on here.

We hear a lot about the term peer researcher.

Could you tell me a bit about what that means?

So when we talk about peer researchers, um, what we are referring

to is people who are in the community, people who are living with chronic

conditions who are now part of the research team in terms of planning in

terms of data collection in terms of analysis, and in terms of presentation.

In other words, they drive the process and are telling a story of

their experience, together with other researchers from outside who are

probably in the universities, but they are the ones who drive the process.

These are whom we refer to as peer researchers.

For this segment, we'll be talking with Wenjor and Satta who worked in

communities, um, that have a story that is probably typical in most,

um, African communities, communities that are more than five kilometers

from the health facilities that can provide basic health services.

So Wenjor and Satta, also peer researchers within the REDRESS program and will be

telling us, uh, about their experience.

Maybe we start with you Wenjor and you tell us about yourself and how you

come to do the work that you do now.

Yes, ma'am.

Thank you again.

I'm Wenjor from Grand Gedeh.

I started my work as the TB focal persons in Grand Gedeh up to now,

until I came out to REDRESS program.

As TB focal person in Grand Gedeh, usually we go out, or I go out in

search of those patients, I have people under me as a focal person.

As a focal person for TB at the time are only focusing on TB and Leprosy but

one interest for which I switch out to REDRESS is that there are lot of lead

diseases that when we go out, we meet up with, and we could not talk about them so

much because we do not have the technical know, how we do not have the way out to

really talk with them and get a treatment.

But now I found out that REDRESS coming out with some of these NTD, not only

Leprosy and TB, but especially with these Buruli BU Ulcer and the others.

So this is why switch me on now as a researcher for REDRESS

okay.

Thank you very much Wenjor um, so come to you Satta tell us about

yourself and, um, how you come to do the work that you do now.

My name is Satta S.

Kollie.

I'm from Lofa country in Selega Town, Voinjama District.

I started working for REDRESS 2020.

We did, uh, uh, photo voice research on photo voice, all of

those things in the other district.

And after working for them at least I was able to get our knowledge on how to

carry on research in the community and how to get the community people view.

If you actually want to get a good information from them, what will you do?

And we spend that two months in the Bush and we did that job.

We came back since then, and then other work they have can be invited and go there

for training and we come and do the work.

That's how I came on board and later I started taking part in the community

advisory board as a treasurer and part of REDRESS community

advisory board in Lofa county.

Okay.

Thank you very much, ums, I think, um, ju just a quick follow up, um, so that,

uh, our listeners would be able to understand this uh, what you are doing

now is you are also working as a peer researcher with the REDRESS program.

Can you tell us how that experience has been, you know, they're not

the usual people that you would work with when you're doing research.

How's that experience been?

Wow.

It have been good, and I love to work with the community people.

Since a left school I've been working in the community.

As soon as you are working in your community, the first place you have to

value the, every human being have a value.

If you need them to understand that we are all together, the

condition they are in, does not bring separation between you people.

They can work with you.

They can give you every all the information you need from.

So it have really been fine of me working with the community people, even

if it be or affect person or survivor, I can be happy to work with them.

Okay.

Thank.

Based on your experience in the REDRESS program, how, how have you found

working with people affected, how has your experience been with that?

Yes, it was fine if you working in with your people in our community,

they see you as your son, as your brother, as your uncle and even friend.

I be going with them, they are happy and myself, I'm happy talking with

them, whether in English or dialet especially then they feel proud.

And that's why myself, I feel proud.

They tell you all their problem.

So they are feel they are free to tell you their problem.

And of course, talking with patients, you have to find out what is the problem.

If they, if you, if you have to be patience in talking with them,

then you know, the way forward.

So of course, indeed, I love it.

And they also love it whenever they see me.

They are proud.

Okay.

Thank you, Wenjor you've brought up a very key point here, and that is being patient.

Um, while talking with the people in the community, particularly

the persons affected, um, right.

I would like you to let our listeners know how you provide support to people

in your community that are living with a neglected tropical disease

and, or a mental health condition.

okay.

Thank you.

This support first or all what we, I think if I look at support in a much, I

give you the technical knowhow, you the affected person, and I tell you do this,

don't do this and you go by it until now.

Today you are free from that disease.

It's one of the key support.

Health talk.

Now.

You talk about mental health before there was no medicine.

There were no person who could tell you about mental health then as a

result, people also fear you somehow.

But this time around, we got people in the various facilities that talk about

mental, that learn about mental health.

So all of these diseases, they are also fearful, but now you get your own person

who speak the dialect where you feel fine.

Okay.

Thank you very much.

And, uh, I think what, one thing that comes out very clear from what

you have just said is, uh, first of all, the fact that the information,

where the information comes from or who the information comes through is

very important and you said, if it comes from your own person, you know,

people tend to want to listen more.

And that, that has provided a lot of awareness and it's increased

enlightenment, within the communities.

So I will come to Satta now.

Um, and I'll just like you to also just share from your experience,

how you provide support to people in your community, living with

neglected tropical diseases.

And we know that some of them could have some mental health conditions.

How do you provide support for these people?

We made them feel important in the society.

They should feel relaxed because if their mind is not set any other

thing you are saying, it can be like you wasting your own time.

But if you go to them, you tell them that they are not the only person

that is going to that problem and you counsel them to feel that yes,

better to give hope, to give hope.

It can be very fine, it can make it people to work with you smoothly and

it can also make it to feel comfort.

Cause as long as you are from there, we can reach you some level

and we speak dialect so that they can feel that, yeah, you part of

them and you, their own children.

We go there, talk to them and they can agree the, on their treatment,

the person will feel happy and we can make sure we make a follow up

also on treatment level so that they can receive their treatment on time.

We do a call for them, all of those things, so they can gain

hope and they can feel relaxed.

Okay.

So thank you very much.

You've you are talking a lot about hope, helping them to see

that they're not the only ones.

Again, like Wenjor has stated is, you know, that connection, being able to

connect, being able to speak the same language, but I just ask you Satta I'll

just ask you a quick question because, um, while we did something similar in

Nigeria, uh, because it's participatory research we had a challenge, an initial

challenge, and that was getting people in the community, you know, to really speak.

And what I mean is when you ask them, what are the challenges that

you have, uh, what do you think you can do to help yourselves?

You know, you get this initial thing.

Whatever you do.

Uh, let the government bring money.

There's a lot of talk about government and about outsiders.

Now I would like you to share with us, if you had a similar experience, you know,

around the challenges of getting people to participate, you know, to take ownership,

to be in position of power, to decide how things go and what they really want to do.

We have CHA, CHV and CHSS all around.

Every time we can tell the people.

White people will not continue to be giving you money.

So do something today, so that tomorrow you can benefit out of it.

Don't just sit and say, accept, bring this, accept they bring this.

And everybody know that let treatment can cause problem and earlier treatment

can be or help to the community also.

So if you got your problem and we have making you to know that,

yes, this problem got a solution.

If we do this, we do this.

You will be okay.

And the person can take their own health into their hands to know

the important of their health.

You're not expecting government to come wash your sore, so it can be, but he

should all that you, a self need to take good care of yourself and other

people will come in to come help.

So we can really make our community to understand the goodness of being healthy.

Okay.

Thank you very much.

And that's quite enlightening, I guess when you say, um, CHA and CHV just

for our listeners if you just quickly explain to us what that acronym means.

CHA they are community health assistant ,CHV, they

are community health volunteer.

CHV are there to give health talk, to understand the importance of health

and for CHA they can give health talk and they can give treatment.

They can treat two or three major condition.

So they are there to do it.

But where in your case, somebody they can down with two or three

conditions, CHA you do refer.

Okay.

Thank you very much.

So these are people, you know, who are in the community and like you have said,

they provide the constant engagement, for the people in the community.

Good.

Okay.

So I come back to you Wenjor how much do you think mental health

has been integrated into disease care within your context.

They came in, as I said earlier on before there was no health talk.

There was no medicine, nobody train for it.

But how do they came into the program or into the health center?

It is because people are now trained.

The nurses I trained, most of the nurses are trained for their mental health.

Okay.

Thank you very much.

Wenjor um, over to you Satta, based on your experience, how much do

you think mental health has been integrated into disease care?

As for me, I would say eighty five to ninety percent, because most of

the health facility, you got the mental health department, you got people are

with counsel and people are even have any other mental health condition.

They can receive the treatment from there.

So I know it have been integrated and people are actually working on it.

Okay.

And, um, how acceptable, how engaging?

Are people, you know, within the communities, are they coming out?

Are they, you know, engaging with the mental health, um,

providers within your context?

You know what people knew, the first time they dont have

information on it, they will just like sit home, they don't wanna go to

health facility, but for now our people really know the importance of help.

They go by themselves and get their medicine and someone else

go by themselves for counseling.

You can walk to them, go there, talk to them and counsel them.

So now we go to them to their very home and go counsel them, make them to

understand the goodness of being healthy.

Thank you very much.

And I think that's a great point there, you know, the community health

assistance, you've said something about, um, many times it's just

counseling that people need and they're there to go to their homes and then.

Provide, um, such counseling for them.

Uh, I think that's critical because one challenge that we face particularly in the

communities is having to leave your home, um, having to be dislodged from your home

and your activities, you know, to be able to take a trip, that could also probably

cost some money to the health facilities, to be able to get that initial counseling.

And, um, it's that gap that, um, pro that allows, you know,

for people not to really engage.

So that's good that that's coming out, so these, that people in the

community who are providing, um, um, that initial counseling and where

there is need to take things further, they're able to counsel to say, you

may need to take these further steps.

Now let's come to, um, communities now and, and I want you to just share how

have communities been involved so far?

Okay.

We involved in the community.

You just ask them for permission, always get consent from them.

If they agree to work with you, they will listen to you.

So when we call for meeting, sometime after the meeting, you ask

them for 30 minutes or 15 minutes, you can explain to them, you take

one topic, you explain to them.

And when one person go and the next person go, they get treatment.

They will build that trust.

As long as the trust is there.

They'll listen to you.

Okay, thank you very much.

Um, so what, what you are saying is, um, leveraging on what

is already in the community.

So where there is a community meeting, you know, a lot of these

programs are integrated into it.

And, um, a lot of integrities taken into agreement and, um, building trust.

Um, Wenjor, what are some of the things, the changes that you're

seeing in the community as a result of, um, these engagement, you know,

with the community, through these community meetings and through other

means, like, um, said earlier on like counseling taking counseling

to the homes and things like that.

What are some of the outcomes that you see?

When you have meeting with them, they listen to you.

You listen to them.

After the meetings, you give them the chance to question you, their

doubt, what they don't know . They are free to come out because

you did explain left and right.

You gave them a chance to question you, you give communication and

put the community people together.

So when you go there and explain the best to their understanding,

they feel free to come forward.

Okay.

Thank you.

So, um, it's, it's made them free to come out.

Um, people are not from what you're saying.

People are no longer hiding and, um, there's an increase in support.

Um, just one more question around that area.

How has all of this affected, you know, stigma and, um, discrimination,

particularly of people, living with skin NTDs in the communities,

how has your engagement affected stigma and discrimination?

Yes, after all of these explanation, all of these answers,

the points of discrimination reduce.

I would say reduce, I can't say no more because they are numerous of people

in different or with different idea.

So for these discrimination, telling the other person, this

one have this, this one had that.

Yes, but completely it reduce.

And so we are still fighting towards it.

The continuing effort by the CHV or CHW going into the community,

even if it is every month, just what we are doing every month, that

alone will completely cut it out.

Thank you.

Wenjor so, um, it's important that engagement is sustained.

That engagement continues.

And, um, it's, it's good news to hear that stigma and discrimination is reducing.

Thank you very much for your wonderful descriptions.

I will hand over back to Kim now for a wrap up.

Thanks, Tosin what wonderful conversation, uh,

that was, I've learned so much.

Any other last messages Satta that you would like to share with our listeners?

We want for you people to really work in line with us so that our

people should not lose hope anymore.

You should keep your courage and your talk with your help that their supply will

always be available, because it would be difficult cause somebody start treatment

and they coming on fine and then later on, they break in for one or two weeks.

It can be so painful.

So we want people to help us in that line so that our people can be receiving their

medication and they will always be happy.

Thanks very much.

Uh, and thank you to our listeners for, uh, listening

to this very special episode.

Please do like rate share and subscribe.

The voices that you've heard today cannot, uh, continue to be recorded and, and

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So thank you so much to our guests.

Thank you very much.

And to Tosin our wonderful co-host and I will see you, in the next episode.

Thank you.

Bye-bye everyone.

Bye.

Thank you.