Episode 3

S8E3 - Being a co-researcher with lived experience of an NTD: ‘I was very much proud’

In this week's episode we hear from Emmanuel Zaizay who is a peer researcher in the REDRESS programme and is affected by Buruli Ulcer, a neglected tropical disease. He shares with us the value of learning new skills, through becoming a co-researcher, which has helped him better connect with his community and contribute to the improvement of medical and psychosocial services for people living with NTDs. 

Emmanuel Zaizay

Co-researcher, REDRESS

I am Emmanuel Zaizay from Lofa County, Voinjama District. I work with REDRESS as a coresearcher and I was recruited as a patient affected person as I was diagnosed with Buruli ulcer. I also serve as a data collector, I work in photovoice settings and participatory methods such as bodymapping and focus group discussions. Currently, I am with the coresearcher team in Lofa County. 

https://www.redressliberia.org/  

Twitter: @REDRESS_Liberia

Fasseneh Zeela Zaizay

REDRESS Country Director, Actions Transforming Lives/REDRESS

Mr Fasseneh Zeela Zaizay serves as the Liberian Country Program Manager for REDRESS, providing overall management for the project in Liberia. Zeela holds B.Sc. in Nursing (Magna Cum Laude), master’s in public health, Diploma of Advanced Studies in Health Care Management, and certificate in monitoring and evaluation. Zeela co-designed Cuttington University’s clinical outreach program and served as its coordinator as well as lectured nursing for 7 years. Before joining REDRESS, he served as the Liberian Country Director of MAP International and Technical Assistant to the Ministry of Health. In those roles, he engaged in strengthening the Liberian health system, supporting the integration of NTDs into the health system, and conducting research on health system strengthening and NTDs. He is a co-creator of the Liberian Strategic Plan for the Integrated Management of NTDS. He is a co-founder of Actions Transforming Lives, a registered Liberian charity and partner on REDRESS also providing financial and technical support to the Ministry of Health NTDs Program, as well as giving less fortunate communities access to safe water and improved livelihoods. 

https://www.redressliberia.org/about-us/people/actions-transforming-lives/fasseneh-zeela-zaizay/ 

Twitter: @REDRESS_Liberia 

Twitter: @FZZaizay 

Transcript
Kim:

Hello listeners.

Kim:

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

Kim:

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

Kim:

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

Kim:

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

Kim:

read alongside using the transcript so that you can really understand

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

Kim:

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

Kim:

school of tropical medicine podcast site.

Kim:

Thank you for listening and enjoy the episode.

Kim:

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

Kim:

I'm Dr.

Kim:

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

Kim:

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

Kim:

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

Kim:

and implementing research organizations about the methods and approaches that

Kim:

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

Kim:

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

Kim:

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

Kim:

connecting citizens to science podcast.

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

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affected by chronic health conditions.

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We will be hearing about examples from neglected tropical

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disease research or NTDs.

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These are a set of communicable diseases that affect the poorest and the most

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marginalized and on top of that receive limited resources in comparison to other

Kim:

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

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Throughout this series.

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

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and other chronic conditions work together with communities and people

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

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Today we will be hearing from Emmanuel Zazay who is a person

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affected by Buruli Ulcer, which is a neglected tropical disease.

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Today emmanuel has agreed to share what life is like for him living in rural

Kim:

Liberia with a chronic health condition.

Kim:

Emmanuel is a peer researcher within the REDRESS research program.

Zeela:

REDRESS a research consortium, comprising of the Liberian ministry of

Zeela:

health and six institutions working in the areas of neglected tropical diseases.

Zeela:

My name is Zeela Zaizay and I serve as the Liberia country program

Zeela:

manager of REDRESS . In 2016, Liberia designed integrated strategic

Zeela:

plan for the integration of NTDs into the health systems of Liberia.

Zeela:

In 2016, WHO recognised that strategy plan as the first ever

Zeela:

design plan globally that will seek to integrate persons affected by

Zeela:

neglected tropical diseases into a national integrated health response.

Zeela:

Since 2016, the Ministry of Health began implementing the plan and by 2019.

Zeela:

The Ministry of Health realized that there were several gaps within the

Zeela:

plan, um, amongst the gaps were the absence of mental health responses, um,

Zeela:

people affected by neglected tropical diseases face stigma and discrimination.

Zeela:

However, the strategic plan did not address issues of stigma and

Zeela:

discrimination or mental health concerns or people with, with NTDs

Zeela:

.In addition, the plan when being designed was not well inclusive of

Zeela:

people affected by NTD conditions.

Zeela:

It was not well informed by community dwellers and our community

Zeela:

stakeholders to a large extend.

Zeela:

As a result in 2019, the Liberian ministry of health and these six

Zeela:

institutions, um, took on forming a research consortium that will study,

Zeela:

um, issues around NTDs in Liberia, and use that as a platform to develop an

Zeela:

integrated response package an integrated model, that will be informed by the life

Zeela:

experiences of several stakeholders, including traditional healers, faith

Zeela:

healers, personal affected by NTDs, health service providers in Liberia,

Zeela:

NTD authorities within the diaspora.

Zeela:

So as the result REDRESS has been, um, formed as our consortium, which would,

Zeela:

at the end of the four year project period, develop an optimal, model

Zeela:

toward deliver of NTDs services that would be inclusive of the views and

Zeela:

priorities of community stakeholders.

Zeela:

We have been working toward training them, capacitating them to become

Zeela:

researchers, having them to lead research, inform the NTDs community

Zeela:

of what priorities are there for NTDs response and what mechanisms or

Zeela:

platforms can be used to address NTDs.

Kim:

Thank you very much.

Kim:

I think it's very refreshing and wonderful to hear that the research

Kim:

program was developed from an identified need in Liberia, um, and by the, the

Kim:

ministry of health and the teams there.

Kim:

So I think it's really important to share that many thanks for, for that.

Kim:

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

Kim:

How are you today?

Kim:

And tell us a bit about yourself.

Tosin:

Hi Kim.

Tosin:

I'm fine.

Tosin:

Thank you very much.

Tosin:

And it's good to be here.

Tosin:

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

Tosin:

of mental health here in Northern Nigeria, the Ahmadu Bello teaching hospital and,

Tosin:

I've also worked primarily research in participatory research, particularly

Tosin:

among, neglected tropical diseases.

Tosin:

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

Tosin:

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

Tosin:

disability and it's good to be here.

Tosin:

Thank you.

Kim:

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

Kim:

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

Kim:

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

Kim:

Thank you Tosin I didn't ask you for a definition early on here.

Kim:

We hear a lot about the term peer researcher.

Kim:

Could you tell me a bit about what that means?

Tosin:

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

Tosin:

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

Tosin:

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

Tosin:

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

Tosin:

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

Tosin:

their experience, together with other researchers from outside who are

Tosin:

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

Tosin:

These are whom we refer to as peer researchers.

Kim:

So let's get on with the episode and hear from Emmanuel, Emmanuel.

Kim:

Welcome to the podcast.

Kim:

Could you tell us a bit about yourself and, and paint us a bit of picture of

Kim:

your life, where you are right now.

Emmanuel:

Okay.

Emmanuel:

Thank you.

Emmanuel:

Thank you ever much.

Emmanuel:

Uh, once again, I'm Emmanuel Guyan Zaizay from Lofa County,

Emmanuel:

Kpakamen Town, Voinjama District.

Emmanuel:

REDRESS Researcher and patient affected person.

Emmanuel:

I'm a Buruli Ulcer survivor, suffer for nine years.

Emmanuel:

Going from treatment to treatment, visited uh, tradition healers, herbalist,

Emmanuel:

went from place to place until lately, in 2020, I went to a clinic where

Emmanuel:

I decided to go on, on the medical treatment, where I was successful with it.

Kim:

Could you tell us, uh, how the official diagnosis happened?

Kim:

Was that at a facility or did you have to go through a number of different, uh kind

Kim:

of specialist before you were diagnosed?

Emmanuel:

Well, uh, it started with bump, I had a bump when I brust the

Emmanuel:

bomb experience, excessive blood shooting from the place I brust.

Emmanuel:

So when I went to the clinic, They have no option.

Emmanuel:

They stop the blood.

Emmanuel:

But before I look, they, the sore started extending just started getting big, big,

Emmanuel:

big, but there were no diagnosis when I went to the clinic to tell me whether

Emmanuel:

it is a Buruli ulcer or whatsoever.

Emmanuel:

I just been going around the belief was people said a in fact since it just a

Emmanuel:

small sore that's just standing it's something in our Liberian language

Emmanuel:

called "Gowa",, they said that Gowa on me Is almost like a witch that

Emmanuel:

witch somebody throw witch on you.

Emmanuel:

So I just been having that stigma, going so I was like confused, not staying into

Emmanuel:

the clinic, not staying into the church, going to have herbalist so I just been

Emmanuel:

going around, going around with no, sign of diagnosis until late the 2019 when

Emmanuel:

I came to the facility kpakamen where I was diagnosed with Buruli ulcer with with

Emmanuel:

Buruli ulcer where the county NTD focal person Anthony Sali took specimen of my,

Emmanuel:

of my wound and carry to sent it Monrovia.

Emmanuel:

And later they started finding pills and I started taking pills

Emmanuel:

and this how I came, I came to be successful with my health

Kim:

thank you for sharing that journey.

Kim:

It sounds like it wasn't an easy time.

Kim:

And in terms of your treatment right now, is that manageable for you?

Emmanuel:

Yeah, for now, my treatment actually is not bad.

Emmanuel:

The treatment is okay since I came from all, while it true at time, I will feel

Emmanuel:

little pain in the legs but it's okay.

Emmanuel:

Since I got advice I'm always with that idea of using the doughnut

Emmanuel:

grease through out and since then I haven't received any surface of it.

Emmanuel:

I'm not recurrence of the sore.

Kim:

Okay.

Kim:

Thank you very much.

Kim:

Could you tell us what this means for your own mental health and others living with

Kim:

conditions like Buruli ulcer also, please,

Emmanuel:

Buruli ulcer also is a sickness that cause stigmatization on you or

Emmanuel:

people who will have the condition, because it will cause you lot of

Emmanuel:

embarrassment in some cases where you, you will have your wear trousers and the sore

Emmanuel:

on your legs will cause will cause water leaking so that the trousers will get wet.

Emmanuel:

So it will stop you from going to gathering, it will stop

Emmanuel:

you from going around friends.

Emmanuel:

It will stop people from coming to you.

Emmanuel:

It cause lots of stigma on you that you will not move freely

Emmanuel:

even in your environment.

Kim:

Thank you very much.

Kim:

That sounds very difficult and very isolating.

Kim:

So the embarrassment and the, and the, the isolation has that changed since

Kim:

you've been involved in research?

Emmanuel:

Oh, yes.

Emmanuel:

Uh, since I've been in this, in this research, actually, it's good.

Emmanuel:

It is good that, uh, REDRESS recognize me and I always say thank God for that.

Emmanuel:

Well for that, and since I joined this research team, uh, the

Emmanuel:

embarrassments have been curtailed.

Emmanuel:

And besides that my life story , have been changed and the sore I had on me,

Emmanuel:

it's already cure, trousers I wear is normal again, is no longer getting wet.

Emmanuel:

So, and people see me all of the time, busy doing my normal activities as usual.

Kim:

Well, that's positive to hear.

Kim:

Um, and I think this podcast is how research and science connects with people

Kim:

who have lived experience like yourself.

Kim:

Could you talk us through how, uh, the REDRESS program first came to you?

Kim:

How did, how did they know where you were and how did they

Kim:

ask you to become involved?

Emmanuel:

Okay, thank you.

Emmanuel:

Uh, I was called 2020 by Anthony Sali NTD focal person in Lofa county, where

Emmanuel:

in the session for patient affected person and he was the one who took

Emmanuel:

my specimen and he heard I alright.

Emmanuel:

I'm okay.

Emmanuel:

Self saw me so that he recommended me to REDRESS and then REDRESS call me.

Emmanuel:

On the interview as God could have it I was successful with the interview

Emmanuel:

and I started working with REDRESS.

Emmanuel:

From the first, from the first phase.

Emmanuel:

I serve as data collector where we did photovoice we did a lot

Emmanuel:

of things in the REDRESS setting.

Kim:

Thank you very much.

Kim:

That's really interesting.

Kim:

How did you feel in the interview when you were called?

Kim:

Was it a, how was that experience?

Emmanuel:

Oh, that experience was very fine because that was my very

Emmanuel:

first of kind to have an interview with, with organization, especially

Emmanuel:

a unique organization, like REDRESS and I was very much proud.

Emmanuel:

Yeah.

Emmanuel:

I was proud of myself.

Emmanuel:

And also I have some, some memory of, of crying because after I've been stigmatized

Emmanuel:

for a period of nine years, and then today I have been called to have an interview,

Emmanuel:

actually, it was a, it was a pleasure.

Emmanuel:

And you, we, I, I just, I just, thank God, thank you, are at time.

Kim:

I think REDRESS is very glad to have you on board and throughout our

Kim:

podcast, we hear, um, you know, how people really want to engaged in research

Kim:

and don't know how so tell us, you said you've been doing some photo voice.

Kim:

Can you talk us through what you did in photo voice and, and how it was for you?

Emmanuel:

We train people to do photo voice, Hannah Berrian taught us to,

Emmanuel:

to teach people, to do photovoice where we distribute their forms on them.

Emmanuel:

Photovoice just have to do with photo that you take and you explain the meaning

Emmanuel:

of the photo, whatever photo you take.

Emmanuel:

You tell us what the photo means, what the photo explains.

Emmanuel:

And what's why you took this photo and, and also taking the photos of conditions.

Emmanuel:

Patients, affected people, you take their photo and you taking their consent, taking

Emmanuel:

consent from them, whether you can take their photos and with all of those things.

Emmanuel:

And I got idea of taking photos and explaining meaning of photo,

Emmanuel:

not just taking photos, but taking photos that you able to explain

Emmanuel:

that you will have control over.

Emmanuel:

So that was one of the good aspects of the photo voice that I learnt.

Kim:

Thank you very much.

Kim:

And the experience of taking photographs and deciding what you wanted to represent

Kim:

in that photographs was that hard or easy.

Kim:

And what processes of thought help you decide what photos to take?

Emmanuel:

That process was, was very easy.

Emmanuel:

But, well, just for example, you went to the community, you tell somebody

Emmanuel:

that I want to take your photo.

Emmanuel:

Somebody will say, okay.

Emmanuel:

Oh, where, where are you coming from?

Emmanuel:

I say, okay.

Emmanuel:

I, I'm a research data collector and we are doing a photovoice.

Emmanuel:

Can you currently allow me take your photo?

Emmanuel:

He then person agreed.

Emmanuel:

And you take that photo as well.

Emmanuel:

And then you tell the person I'm, I'm taking your photo, take person

Emmanuel:

photo you come and explain the photo.

Emmanuel:

Sometimes the person will say, you don't have to take my face just take

Emmanuel:

the, the wound photo and explain because sometimes the person don't

Emmanuel:

want the photo to be, to be publicized

Emmanuel:

so you take photos, you take photos that you have control over what we have.

Emmanuel:

We took ambulance photos.

Emmanuel:

We took, we took motorbike photos.

Emmanuel:

We took monkey bridge photos, bad roads photos that we could explain to

Emmanuel:

REDRESS and also explain to national Government that do with the ministry

Emmanuel:

of health Liberia, telling them that these are conditions people facing.

Emmanuel:

This is why we took their photos.

Kim:

Thank you very much.

Kim:

Sounds very impressive.

Kim:

Once, the photographs were taken and you collected that data, what happened next?

Emmanuel:

People, some people welcome you to take that photo.

Emmanuel:

It's been a long time since they got conditions or they having

Emmanuel:

conditions in our community.

Emmanuel:

People have not been around to take photos of their condition to carry,

Emmanuel:

to say, okay, these are problems we're faced with, so there was no problem

Emmanuel:

in taking photos and we, and the people already welcome it as well.

Kim:

Wonderful.

Kim:

So the purpose of the photo voice for you was to share the experience

Kim:

of what it was like living with neglected tropical diseases.

Kim:

It sounds like you've been a wonderful data collector.

Kim:

One of the things that we like to understand is how was your experience

Kim:

working with researchers, researchers, you know, there a unique group of individuals.

Kim:

How did you find it working with researchers and working

Kim:

in the field of science?

Emmanuel:

Oh, okay.

Emmanuel:

Thank you.

Emmanuel:

I found it very much good.

Emmanuel:

And I found it very much easy working with, with REDRESS especially as data

Emmanuel:

collector and that of co-researcher.

Emmanuel:

With all the time.

Emmanuel:

I, I felt I found it good because I have been stigmatized for nine years.

Emmanuel:

I not been, I not been having opportunity to move around people,

Emmanuel:

especially being in a gathering.

Emmanuel:

So for me, being selected to serve as co- researchers, or even as data collector

Emmanuel:

I found it very much pleasant to my life and I always bless God that I was chosen.

Kim:

Thank you very much.

Kim:

Um, it's it sounds like being involved in research has

Kim:

changed your life quite a bit.

Kim:

Um, do you, uh, talk to other people about being involved in research, people that

Kim:

are also living with other conditions?

Emmanuel:

Oh, yes.

Emmanuel:

Uh, people who live with conditions.

Emmanuel:

I told them, especially like for my hometown have been moving around, telling

Emmanuel:

people who are the sickness, and I always show them my wound I'm not ashamed of it.

Emmanuel:

Even I telling you the condition that I have, the length of time.

Emmanuel:

I had the sore and now today I'm okay.

Emmanuel:

And I was selected by organization called REDRESS and I'm serving as co- researchers

Emmanuel:

and its good that I was selected.

Emmanuel:

So people feel happy that at least I'm one of the patient

Emmanuel:

affected person talking to them.

Emmanuel:

So they feel convinced and they feel encouraged to give me the time to talk

Emmanuel:

to them or even those who moving with me, they get trust in us because I'm a very

Emmanuel:

good example of the, of the Buruli ulcer

Kim:

That sounds wonderful and it gives me goosebumps.

Kim:

Thank you so much for sharing your experience of being involved

Kim:

in, in research . Emmanuel, take us home with one final message.

Emmanuel:

Okay.

Emmanuel:

Thank you very much.

Emmanuel:

Uh, I wanna take this time to tell REDRESS, just thank you so much for

Emmanuel:

the level of exposure in my life, especially when I've been stigmatized

Emmanuel:

for nine, most of my lifetime.

Emmanuel:

I want to tell REDRESS family thank you so much for my life.

Emmanuel:

And also I'm asking REDRESS to come and use me always in this program, because I'm

Emmanuel:

seeking an education since nine years ago.

Emmanuel:

I have been with the condition.

Emmanuel:

I have not been able to go to school because of stigmatisation.

Emmanuel:

I can't go to school cause of the wound, every time it's smelling, every

Emmanuel:

time it's soaking up loose on me.

Emmanuel:

So I have not been able to go to school.

Emmanuel:

I'm okay.

Emmanuel:

I want to go back to school.

Emmanuel:

So I'm currently asking can redress to help me or people who

Emmanuel:

are listening to this interview so that everybody can help me up.

Emmanuel:

So I can go back to school, that that would make me very happy and

Emmanuel:

I want to best call for redress, make God bless REDRESS in all of

Emmanuel:

the thier projects they are taking in Liberia in the world at large.

Emmanuel:

And I also want to thanks redress for helping NTD patient, especially

Emmanuel:

Buruli Ulcer, also to be, to be helping us in Liberia at large.

Kim:

Thanks very much.

Kim:

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

Kim:

to this very special episode.

Kim:

Please do like rate share and subscribe.

Kim:

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

Kim:

shared with the world unless, uh, you are, are following us and, and supporting.

Kim:

So thank you so much to our guests.

Kim:

Thank you very much.

Kim:

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

Kim:

Thank you.

Kim:

Bye-bye everyone.

Kim:

Bye.

Kim:

Thank you.

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Researchers and scientists join with communities and people to address global challenges

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Kim Ozano

Research and Development Director at SCL and co-founder and host of the ‘Connecting Citizens to Science’ (CCS) podcast. Kim is a health policy and systems researcher with over 15 years’ experience of designing, delivering and evaluating health and development projects in the Global South and UK. She is an implementation health research specialist, as can be seen from her publications and work at the Liverpool School of Tropical Medicine, where she remains an Honorary lecturer.
Kim creates space in Connecting Citizens to Science for researchers and communities to share their experience of co-production to shape policy and lasting positive change.