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 organisations 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.

As NTDs affect the most vulnerable they are often described as a

tracer to track health equity.

We will be hearing a little bit more about that.

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 of chronic conditions.

So we can better understand their health issues.

As always, I have a wonderful co-host with me this month, Dr.

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.

I have a PhD in psychology and I work with the department of mental

health here in Northern Nigeria, the university teaching hospital.

I've also worked primarily research in participatory research,

particularly among people who suffer from 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.

So our episode guests today are Dr.

Julian Eaton, who is a public health psychiatrist, an assistant professor at

the London School of Tropical Hygiene and Health, he is also the medical

health director for the NGO CBM global.

We also have Dr.

Rugema Lawrence, who is a public health professional at the University

of Rwanda, a collaborator with the Brighton Sussex Medical School, which

is an NIHR funded global research unit on neglected tropical diseases and most

of his work has been on mental health.

So welcome both to our guests Julian, let's start with you.

How are you today?

Hi, Kim.

Yeah, I'm fine.

Thanks.

Um, it's, it is good to be starting to see the world again, I suppose that's

the best way, to think about it for me, I feel like we're emerging from the

COVID period, which was frustrating for those of us who work in international

health and, I've just started visiting some of the countries where we work

and that's really, always encouraging to see the great work that people are

doing in different parts of the world.

Thank you very much.

And we look forward to hearing more from you.

Dr.

Lawrence.

Welcome.

How are you today?

And what is your area of interest when engaging with communities?

I know that whatever we do, be it research or be it

any other intervention, it's for the wellbeing of the community.

So I think whatever we do, if it is in the best interest of the community

that's why I always want to work with the community to engage with them so

that they can have a say in what we do, and they can, whatever we change,

it can be based on their interests.

Thank you very much.

So about inclusion of voice and to make sure that our research meets their needs.

I think that's a, a very good summary.

So just moving back to you, Julian.

I think there was quite a lot of technical language already in the introduction.

So I wonder if you could start by helping us and our listeners

out to understand what exactly is meant by chronic conditions.

Maybe you could give us some examples of NTDs or neglected

tropical diseases and how does this all fit with mental wellbeing?

Thanks, I think the, the key word in all of that is chronic.

And, um, it's funny.

We use these terms in very different ways sometimes within kind of health

spaces and in, in the general population, chronic basically means long term.

So we're talking about people who have conditions that last for a very long time,

unlike some infections where you can have a condition, receive an antibiotic or

something, and it's over, it's finished, but these are conditions that people tend

to have to live with for a very long time.

So sometimes there are infections like HIV or TB that go on for a very long time.

A lot of them are within the realm of non-communicable diseases.

So another acronym, NCDs, which is things like diabetes or respiratory

conditions where people have to learn to live in a different way because of a

condition that's not going to go away.

Often, neglected tropical diseases, which is the focus of a lot of the work

that the three of us here do, last for a very long time, they're almost all

infectious diseases, but they tend to affect people in a way that makes, causes

a permanent impairment or a long term disability, therefore they often fit

into this category of chronic diseases.

The reason why there's quite diverse range of conditions are put together

is because you have to think about them in slightly different way when you're

looking at how to support people.

It affects people in their very social parts of their lives, as

well as the treatments they receive, but also they often need to keep

coming back to receive services.

It often affects them in terms of poverty and ability to earn a living, for example,

and it often actually, there's a kind of common impact on people's wellbeing.

I know that we're gonna talk about wellbeing in a second, but having to live

with a condition for a very long time that might be painful or debilitating in

some way, really does have an emotional impact, which is why this podcast is

so important for us, to put those two things together, and how we can as

service providers and researchers think more carefully about this particular

group of people and how we can think about supporting their wellbeing.

Thank you very much.

That certainly helped me understand that and for our listeners, the last series

we had was on non-communicable diseases.

So to hear a little bit more about that do listen to our previous episodes.

So Julian, thank you for that.

It's it's looking beyond the medical is what I'm hearing a little bit here to

the social factors and, I really like the terminology of bringing emotion into our

thinking when we provide health services.

So Lawrence thinking about emotion and dealing with kind of the

impact of long term conditions.

What do we mean by wellbeing?

Thank you, Kim.

Mental wellbeing is the state of mental health that enables somebody to cope with

the daily stresses of life, for somebody to realize their abilities and to enable

them to contribute to their communities, to me that's the understanding of

what means by mental wellbeing.

I think Lawrence has covered it really well.

I think the important thing to recognize really is that none of us live in

isolation and our wellbeing is entirely dependent on the people around us and

the society we live in and I think that's what has the biggest impact on it.

So often we tend to think of wellbeing as something that's about an individual's

status, how they feel about their life, are they living life well, but

actually you cannot separate that from the environment in which they live

and that's often the target of our interventions, both individuals and

also the environment in which they live.

I may continue and say, why is it important to consider in

a patient with clinical conditions?

We know that, from such evidence, that clinical conditions exposes patient to

the risk of depression and depression is one of the mental disorders.

There is also evidence to suggest that treating depression and the chronic

conditions both together, if they are put together, people who are suffering from

them can better be treated and it's better that they can manage it together because

chronic conditions expose people from depression and if they're put together,

I think they it's better off managed.

I think that's really important, it's recognizing and treating

both of these, kind of individual social and environmental factors.

For our listeners, Dr.

Lawrence, could you possibly tell us a bit about Rwanda.

So paint a picture of what a patient with chronic condition who might

have depression and some of the challenges or opportunities that

might exist within your context.

The challenges, opportunities within our context are at the back drop

of our history here in Rwanda is that we had the terrible genocide here, and

therefore you'd expect that there are a lot of people with the mental disorders.

The setting would be that when you have mental issues and a chronic condition, it

should be that they are integrated, these days, we see increased the availability

of palliative care for chronic conditions.

Family members have a very big role to play in terms of emotional support for

people with the chronic conditions, and this is complimented by psychological

support from healthcare providers but specifically in some case, find that, you

find somebody with a chronic condition and does not have a relative offer

that emotional support because maybe all the family members were killed.

So there's no person to do the care for that person.

So that's the context.

We find that some, because of the, uh, we have a system of community health

workers and some community health workers can identify some of those

people and in one way or the other offer that support instead of the,

the relatives where they're missing.

But you find that it's not sufficient because, um, emotional support is

better offered by a family member.

Thank you very much.

I, I really think that helps to understand the context.

Um, and it also shows that you need to understand the history and

the political context of a country when thinking about treatment and

conditions and the availability of family as a support network.

Julian, do you have any experience from other contexts in relation to mental

health and chronic conditions and why it's important to consider context?

I've worked mainly in Africa as well.

And, we've just finished a research study in, um, the Southeast of Nigeria

really looking at the way that people, particularly who have leprosy and who

have lymphatic filariasis, which often causes very limbs which can be very, um,

debilitating, um, have been able to, or not been able to see emotional supports as

part of what they're given by government.

And what we really found was that they, those two are often siloed.

So for them, they want to see access to the kind of physical care and support

they have been able to access at the same time as a recognition that the environment

they live in is really stressful for them.

That actually stigma which is the word that we use quite a lot, but it's, it's

a very impactful thing on people who want to be a part of their community.

And yet they're often restricted from being able to do so because

of something that is entirely incidental, it doesn't define them,

but they find that it defines them.

So that, that environment, the broader context of attitudes that tend to put

people in boxes based on a, on a physical condition, especially this kinda skin

NTDs that, that Tosin was talking about working with earlier, because they're

particularly stigmatizing, people, particularly label people in this way,

and they're not allowed to participate in a society as other people would to

marry and to have a job and all the things that we all find important and

are very important for our wellbeing.

Uh, so, but you know, that was our, our experience there really was that

people appreciated the physical support that traditionally has been prioritized

for them, people have seen that they need, you know, support that's fine.

But what about all the other things that they, that they also really value to

have a good life and to have wellbeing, uh, and those kind of contextual,

broader factors often aren't seen as important within healthcare services.

And I think that's probably what needs to change.

Thank you very much.

I, it sounds very complex and I think possibly requires a

systems thinking approach.

So really looking holistically.

So I'm gonna hand over to Dr.

Tosin now to carry on the conversation over to.

Thank you, Kim.

We're having quite an interesting conversation here and I'll just come back

to Julian based on the last comment that you made about a lot of stigma, a lot of

discrimination, exclusion and distress.

Incidentally WHO has this publication in the year 2020 on the person-centered

approach and I would like you to just help our viewers, looking at what people's

centered health services are and what would be the potential considerations

when trying to achieve them particularly in relationship to mental health.

Yeah.

Thanks.

Thanks.

Tosin um, the, the idea of people centered services really came about, because it was

recognized the way that historically we've set up health services for the convenience

of the people providing health services.

So the patients or the people with health problems are seen almost as incidental.

You know, the, the there's the siloing of you go there for one particular

problem and here for another problem, and obviously that reduces how

easy it is for people to be able to access a range of services if

they don't just have one problem.

It took a very surprisingly long time for health service planners to realize

that this was an issue actually, because people are complex they have multiple

needs, um, and it's not convenient for them to have to fight very hard to have

all of their different needs assessed.

So the idea is really to switch that around and say, How can we think about

providing health services in a way that's convenient for the people themselves,

recognizing them as a whole being, having maybe a range of physical needs, also

having emotional and mental health needs and actually often social needs as well.

So that, that was the logic of it really, as saying, let's think about

the person at the middle of this and how they can conveniently access,

um, different types of care together.

But I actually think it's more profound than that because we've always,

actually assumed as professionals and as, as people planning services that

we know what people want and actually often when you ask them what they

want, we get quite surprising answers.

So this is a, a revolutionary approach.

And I was actually really pleased when I heard.

Because we'd been working together on this WHO document and when they decided

to really focus on that person centered approach as the title, I thought that's

a brilliant demonstration really of the way that we are turning around

the way we think about support for people with NTDs, cause it is about

recognizing them and their priorities as important and that then ask the question.

Do we really know what they want, how do we find out what they want

and what their communities want?

The question now I would want you to share with our viewers

about is a lot of us have been trained with the power of this is my

area of specialty in mental health.

Now you come to me and then I tell you, this is how to do it.

Now we're shifting to say, what do people want?

And then to be able to provide services based on what people want.

How easy has it been, in your experience and based on your research, for

professionals to really engage with this shift, specifically looking at the

participatory approach to communities and to those who would access services.

To be honest with you, I think it's one of our biggest challenge.

Yes.

Professionals are not different from the community around.

And if you're talking particularly about stigmatized conditions, like mental

health problems, or the kind of NTDs that, that you and I work around, they

often reflect that same stigma and that often means that the people who are

relatively marginalized and not empowered in that society are given even less

chance to ask questions or to be given the right amount of information about

decisions being taken on their behalf.

So I think often professionals reflect the same kind of patronizing attitudes and

stigmatizing attitudes as other people.

And the problem is it, that power is reinforced by patients in this

relationship often saying that and communicating that as well.

You are the expert, tell me what, and I think it's gonna be a journey that we

have to go on to make the basic point that the most expert in the room about

their own condition is that person.

And actually that's more true of the chronic conditions that we're

talking about in this podcast than of short term conditions.

Because, if I had a big medical problem that just come on, I would

want an expert to tell me what's going on and to sort it out.

If I've lived with diabetes or with the long term impacts of leprosy for the

last 30 or 40 years, I know far more about my situation and I probably know

more about the medical side of it as well, actually than the person sitting in

front of me who's only known me for five.

And I think that message needs to be conveyed.

And I think it is changing, it's gotta be part of training.

It's gotta be part of attitudinal change, but quite a lot of

our stigma work actually is directed towards professionals.

Is quite an important target group, especially if you can get people

early in their training, as well as attitudes of the populations.

I think basically we all always assume that because a professional had

been trained over time, they it's assumed that their attitudes have changed and

it, it really doesn't work like that.

One key thing that you have mentioned is that the professionals

are also a part of this community.

So many times some of that stigma, some of that discrimination may be laced around

our knowledge, and the key also that you have brought out is the fact that

there's a difference between somebody who has had a condition just come upon them

immediately and one who has lived what we would refer to as a chronic condition.

Lawrence, based on your work in Rwanda would you be able to share with us

how communities and people have been involved in tackling these issues

specifically, stigma, discrimination, accessing mental and social healthcare,

and have we gone any farther?

What needs to be done?

Thank you, Dr.

Adekeye for that question.

I think our entry point in run has been through community health

workers, community health workers will stay in the communities.

So when designing either health strategic plans, the community workers have the

role to play in what goes into that.

So they do participate, they pro provided treatment for my malaria, for family

planning and maternal health care, they also do a lot of work around that.

So when we are talking about strategic plans, they are part and parcel for

that planning, that's not to say that is all we need to involve communities.

We have community outreach, which we call integrated community outreach, that which

send medical students to communities to identify problems in the communities as

part of their internship, so that when they go to train, they see the problems

in the community, but of late, we had evaluation of how that approach or that

outreach works and what we did, we went to the community and we asked them about that

program and we asked them to tell us what we should change in that outreach program.

And as part of evaluation of that program, we were asking the people

in the community to tell us what they think health or wellbeing is.

And you find that somebody will tell you to me, health and wellbeing means

having health insurance, and another one will tell you health and wellbeing

means for me having having a balanced diet, the other one will tell you

it means for me having security.

So meaning that what we basically understand as well as health and

wellbeing, the community members, their opinion would be different and for us,

that is also important for us to know.

And when we have all that information, then we can best know how to

engage them and how best they can participate in designing the

programs that are geared toward tackling their daily health problems.

So from the one perspective, those are some of the key things

that I can share with you in relation to community engagement.

Just a quick follow up on that question.

You and I obviously are Africans and you said something that is very

critical about health and wellbeing and going to the communities, to ask

what they think health and wellbeing is, now let's just, let's look at it.

Maybe contextually, is there a difference?

And if there is what are, what is the difference between the definition of

health and wellbeing for somebody in an urban community, for example, highly

urban, probably in a place like Kigali, and for someone, who is right there in

the rural areas, is there a difference?

Why is that difference?

And how can we pull all of that together to better engage

people within these communities.

Yes.

There's a difference because the difference is brought in based on

their daily challenges, they don't experience the same challenges.

So somebody in the rural areas probably might find, walks more kilometers

to the health center more longer than somebody from the urban area.

So their challenges are different and their understandings

are not the same, but.

The reason why for us, we wanted to know what we understand by that is that if

you're going to design awareness raising campaign or behavior change programs, it

is important for you to know what people understand by certain concept so that you

don't address, you don't press fact the wrong thing to, so you need to understand

their concept around certain concerns, so that when you come up with awareness

raising, if you are telling people, please wash before to avoid it, for example,

COVID, there was just a mass awareness raising for people to shower before.

Don't greet.

We needed to understand all those concepts so that when we design

a program that are geared towards behavior change, we know what peoples

understand by certain concepts.

I think you brought in something very important and that's culture, now you

mentioned Covid and I remember that here in Nigeria, we had a challenge, initially

when you have behavior change programs and you come and say, oh, don't hug.

Don't greet don't shake.

Yeah.

Now some of our social context, if you didn't hug somebody, it meant you

had something against that person.

So for a lot of them, this is a culture that I have always known.

And then there's the mindset of we're all going to die or something anyway.

Why is this now suddenly going to change our social cultural

mindset, that's on one hand.

And then on the other hand, you have people who are grappling with poverty.

And, somebody says I'm hungry.

It's not about a disease that is going to kill me.

I'm going to die of hunger anyway, so I think you brought out something that is

very critical, when we roll out a lot of these health programs it's important

to engage communities because what we consider as priority may not be what

the community considers as priority, and that would affect the uptake of

whatever we are doing in the long run.

To come back to how care for chronic health conditions , how we can

link the mental health services with chronic health conditions?

Yeah, thanks to I really like the way that Lawrence talked about that,

having to do it on so many different levels because we've tended to work

in isolation, in health and what this is all about is linking together the

different things that people themselves have said is important and attitudes

and the economy and all of those things are really important as well.

As I said, we've often worked historically in isolation and that's

the revolution that needs to happen is bringing together in a logical way.

The way that any individual can access a range of services in a way that's

not offputting for them, that's not expensive because they have to pay

five different providers that doesn't take time because they have to travel

to three different cities, that is is really very convenient for them and often

actually many of the different chronic diseases that we think about, whether

it's HIV or noncommunicable diseases or neglected tropical disease, they very

similar kinds of patterns of use because of the fact of them being long term.

So you know, what you really need is a place that someone can

go that's quite local for them.

So integrating all this into primary care, ideally.

Maybe into secondary care if necessary.

Seeing someone who's able to really provide for their basic needs,

doesn't have to be a professor.

It needs to be someone who knows how to deal with what they're coming to

there and really that task shifting towards having the person in primary

care, able to provide a good basic level of sensible care is the

revolution that needs to happen.

And that's really the journey we've taken in global mental health.

And a lot of that learning about bringing good quality, basic care to people

where they are, can really be applied very well to get that integration into

support for people with chronic diseases.

So I'm really, very excited about where we are now, because I think the

policies that have been put in place based on some really good evidence

now of having essential care packages for what should be delivered at that

primary care level, of having a good integration at a kind of regional or

even national policy or a new master plan for neglected tropical diseases,

say, let's also think about wellbeing.

Let's devote a certain proportion of the budget towards wellbeing.

Let's make sure that all the frontline workers understand how to

be empathic and thoughtful and ask the question, how are you feeling today?

All those changes in the way we're thinking are really now supported by

good evidence based the person-centered care approach document that you

talked about, but also the roadmap for NTDs, the global roadmap has

absolutely shifted towards thinking about whole person rather than just

eradicating these conditions or treating people's physical needs immediately.

There are really good guidelines for doing that now and it's all

about bringing comprehensive support to people where they are.

Doesn't have to be flashy.

Doesn't have to be delivered by professors.

It needs to be done competently by the people they meet when

they go to a primary care centre.

Yes.

Thank you very much, Julian.

I think one point that I have, that I'm going away with is particularly

the fact that it doesn't have to be delivered, it doesn't have to be

complicated, because I remember that my first entrance into particularly

chronic diseases while I was presenting my work at PhD to work with patients

who have been living with glaucoma, I was met with this initial resistance.

What are you going to do there?

How are you going to work there?

Psychology has no relationship with all this.

And earlier on you had said, it's that patience, at getting people to come

gradually to that understanding, and to see particularly from training, right

from the beginning of their training, the importance of how all these work together,

but I'll just ask another quick question.

There's this thing about the politics of the delivery of health services there's

this rivalry amongst professionals.

This is my patient.

This is my case.

When I'm done with mine, I'll send him to you and I think that

creates a disjointed, so that the services are not presented together.

It's not convenient.

It's not looking at the beneficiary and saying, instead of asking him to come back

in two weeks time, we can co deliver so he gets it at the same time at less cost.

Yeah.

And it's convenient for him.

How do we walk around these political rivalry?

I think demonstrating it's a win-win, I think a lot of these

rivalries come because people feel like they're in competition for resources.

Partly or with, within a hospital, there's a limited amount of space or whatever,

actually what we know, there's very strong evidence to show that if you address the

emotional needs, especially with people with chronic conditions, they're much

more likely to do well in their health as well, their physical health as well.

So the best evidence is really about people taking complex long term

drug regimes, like for HIV or TB.

If, if someone has depression, that's not addressed, they feel really low.

They're a bit hopeless about their future.

They're much less likely to take nine months worth of complex drugs.

Whereas actually, if they're feeling positive on top of things have

had it well explained to them, they feel agency and in control.

Then the person who cares mainly about whether they take their

pills every day is also a winner.

So I think it's communicating that it's a, it is a win-win and not a competition.

And I think mental health, care's a little bit different from some of

the other subspecialties where you might need to see a different person

for two different physical health problems, mental healthcare is good

communication and empathy and actually saying the right supportive things.

You don't usually need to refer to a mental health specialist.

Now if you've got a counselor in the team, that's really great, but

actually every healthcare professional should be good at this stuff.

It's not something you refer someone else for good communication and empathy.

You should be doing that as a competent health professional.

And I think we should be making doctors and nurses proud of being

a good communicator and of being an empathic listener and someone

who's able to communicate well, even what the medication is for and

what side effects someone might get.

If you don't do that, they'll stop taking the medicines because they have

a problem they weren't expecting the day after they walked out your clinic

and you won't see them for another year.

There's a failure of your profession and you need to be a good communicator to, to

do your profession well, I think, okay.

Thank you very much, Julian, for that.

I, I put in that question because some of our listeners may be

people who are involved in training mental health professionals.

I have taught medical student for so many years now.

And one thing that you have said that comes out all the time is, communication,

empathy, and all of that helps, you find patients wanting to, oh, I prefer this

person, if that person is not on duty, I'm not going to see any other person.

And it's primarily because of the kind of communication.

So Lawrence I'll come back to you very quickly and just share your experience.

Particularly in Africa, with regards to these issues relating

to professionals and the challenge of rivalry among professionals.

Oh, thank you, Dr.

Adekeye, in addition to what Dr.

Julian has said, I will say that we need to do more advocacy to

mobilize around political will.

So I've realized where these political will also resources

are allocated around that.

And you can have more cohesion and then you can have more integration.

So where there is protocol and the resources put for that I think that can

be one of the solutions to, to silos.

Okay.

Thank you very much.

So I hand about back to Kim now for the wrap up.

Thanks very much.

What a delightful conversation this has been.

I have learned so much.

So in 30 seconds, starting with you, Lawrence.

Tell me what advice would you give to researchers and scientists

so that they can better connect with people and communities?

Thank you, Dr.

Kim, uh, the best way that people doing research, they can connect,

uh, connection with the communities.

One of the ways is that during the process of treating people with the

chronical conditions, when you're treating patients, they have care givers.

They are relatives, I think as researchers, we need to get a lot

of the perspectives of people who are giving care to those people who

are giving the emotional support.

There's a lot we can learn from them.

So I think, um, as we labor to engage more the community, those are the

people we can begin with to speak to.

Thank you very.

They have a lot of experience in those people they are supporting and they have

a lot of challenges and through those challenges and what they experience while

they're giving care, we can learn a lot on how to redesign the care for those people.

Thank you very much.

Thank you very much.

I think that links very well to your point at the beginning of, uh,

family members and, uh, thinking extensively, who is giving that care,

Julian, same final question to you.

I would really just build on what what Lawrence said that

this doesn't happen naturally.

People have been disempowered, they haven't been asked historically.

And if we are going to do a better job, we need to consciously build

into how we do things, asking.

Empowering people, when you are setting up a new service, make sure you sit

down with people affected and their families and ask them what they want

rather than assume, make sure that if, if there's a monitoring or evaluation

process, that they're part of the voice that comes in and has done it.

So without structuring a real effort to give space for this voice, and

then make sure you're accountable to say, we're gonna do something

about what they say, even if it's inconvenient, it won't change.

So it's not enough just to think it's a good idea how you could practically

going to make a difference on the basis of what people actually say.

Thank you very much, really important point . That's a

wonderful place to end this episode.

Thank you to our guest for an amazing conversation and our new co-host and

finally, thanks to all our listeners.

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