Spotlight on community engagement and involvement (CEI): What mechanisms and structures best support meaningful CEI across multiple countries? Part 2

The second episode in this series, split into two parts, discusses the implementation of community engagement and involvement (CEI) across a range of countries and explores the different approaches used across these countries. Host, Doreen Tembo, Global Health Community Engagement and Involvement Lead at the NIHR Coordinating Centre is joined by members of the research team studying Cutaneous Leishmaniasis and intervention programmes to improve patient experience and reduce stigma.

In part 2, the guests focus on CEI challenges faced across multiple countries in their project, how to overcome these challenges and give their tips for embedding CEI in global health research.   

If you’ve listened to any of our podcast series on community engagement and involvement (CEI), we'd love to hear what you think!

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Please note these podcasts were recorded in early 2022. The views and opinions expressed in this podcast are those of the host and guests and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.

Listen to the first part of this episode here: pod.fo/e/1532ff

Transcript

Podcast series: Spotlight on community engagement and involvement: Improving global health research and outcomes through engaging with local communities

Episode 2 Part 2: What mechanisms and structures best support meaningful CEI across multiple countries?

Speakers: Prof.Thilini Agampodi, Kelemework Tafere Reda, Dr Helen Price, Doreen Tembo, Clarice Mota

Doreen Tembo  00:06

Hello, my name is Doreen Tembo. I work for the UK National Institute for Health and Care Research, also called NIHR. And ah welcome to this podcast series which spotlights on community engagement and involvement, improving global health research and outcomes through engaging with local communities. Welcome to part two, where we continue exploring what mechanisms and structures best support meaningful CEI across multiple countries. And I'm delighted to be joined again by members of the empowering people with cutaneous leishmaniasis intervention programmes to improve the patient journey and reduce stigma via community engagement. The short project title for this is ECLIPSE and this research study is funded by the NIHR Research and Innovation for Global Health Transformation, which we also call RIGHT. Today I would like to extend a very warm welcome to the Co-lead investigator, Dr. Helen Price, who's a professor of parasitology at Keele University, and Thilini Agampodi who's a professor in social epidemiology at the Department of Community Medicine in the Faculty of Medicine and allied sciences in Rajarata University of Sri Lanka and also to Professor Clarice Mota from Brazil, who is an associate professor at the Instituto de Saúde Coletiva UNFBA,in Brazil. And I would also like to welcome Dr Kelemework Tafere Reda, Associate Professor of Anthropology, College of Social Sciences and Languages Department of Sociology at Mekelle University in Ethiopia. So, I'd like to ask all of you, looking back over the last few years that the project has been running, what would you say the main challenges for community engagement and involvement or CEI was? And how did you address those challenges? So perhaps, we can continue with Helen, on what your take is around the whole work programme. 

Dr Helen Price  02:28

Okay, so one of the major challenges we had was COVID-19.  So we started the project at the end of 2019. So we were ready to start the community work in early 2020. And that was when the world went into lockdown. I don't think anyone was prepared for that.  And it meant that we were not able to travel. We were not able to visit communities. So this needed a lot of thinking, changes in, in our methodologies. And across the team, we really changed what we were doing while still engaging the communities so Thilini and Clarice can give really good examples of how they've, they have done that.  

Doreen Tembo  03:35

Right. Okay, so perhaps we can explore that a bit more country level and perhaps now we can start with the Ethiopian perspective.

Kelemework Tafere Reda  03:45

So the first obvious challenge was, I mean, it emanated from the fact that the project team members came from different disciplines, which means that they do not have equal amount of knowledge and experience on CEI. Obviously, social scientists, such as anthropologists were better positioned to to know better about CEI, but this gap was later narrowed through a series of training sessions particularly designed for those who come from the biophysical sciences.

Doreen Tembo 04:20

Right, thanks for sharing that, I believe you also had to work within an environment that was challenged by conflict? That must have created a major challenge to your community engagement work. You must have had to make some adjustments to the work you were planning to do for example. Perhaps we could hear from Helen and Kelemwork on this topic?

Dr Helen Price  04:43

There was a conflict in in Ethiopia between the federal government and the region of Tigray and this has resulted in a telecommunications ban. There was a travel ban for some time, the security situation has been very unstable. And it has caused a lot of instability, a lot of a lot of hardship for the population.

Kelemwork Tafere Reda 5:13

Internet and other vital services are still down as we speak. But nevertheless, despite such challenges, the team in Ethiopia is progressing well. They have done some ethnographic fieldwork and they are engaging people on the ground. They are sharing their experiences with local communities and learning from the local communities experiences and so on and so on. 

Dr Helen Price  05:39

So our team in Mekelle, have amazingly carried on with the research that they're doing.  When they've been able to, they've traveled to our original field sites to do interviews, some activities have not been possible, because populations have been displaced, people have have moved around because it was not safe to be where they where they lived. There are lots of shortages of basic resources as well, such as food and fuel. So that of course is has really heavily impacted on the on the team. But we're absolutely amazed and humbled by the fact that they're continuing to work and to progress with the research.

Kelemework Tafere Reda  06:34

Yeah, I mean, we had to make some adjustments when it comes to the fieldwork sites, we

avoided going to the mountainous areas where the conflicts are very serious and remote areas in Tigray  around the border areas with other regions and also with with Eritrea. So one approach was to try to adjust ourselves to the existing situation in terms of, you know, selecting other sites, instead of the conflict ridden areas, also becoming a little bit a little bit flexible with the methodology. So, we actually avoided staying unnecessarily long time in the field, instead, shorter, but frequent visits were made. And, whenever appropriate, we also invited some of the community members to safer locations where we can conduct interviews and discuss about how things are progressing on the ground.

Doreen Tembo  07:46

Thank you so much. And could we hear what happened in Brazil Clarice? 

Clarice Mota  07:53

Yes, for sure COVID-19 is the biggest challenge that we are, we were not prepared, like Helen said, and sometimes the rural areas don't have much cases of COVID. But since we are in the urban area, where is the main focus of the condition, sometimes when we enter the community, they fear us. So it's very common to have the moment of our transportation come into the community, and people will grab their masks, and be very afraid of us because they feel we can bring COVID-19 to the small communities would be and that would be a disaster, because they do not have the infrastructure of hospitals, like we have here in urban areas. So we need to be much careful to preserve these communities. So this this is for sure the biggest challenge and every times we have in the news, for example, now, we are facing the fourth wave of COVID. And this, this is in the news. And of course they watch TV, in even in rural communities, they all listen to the news and things like that. So the preoccupation of we were much worried to have tests. So we take tests of COVID-19 before entering the communities and even with all this, this care that we are this effort of avoiding to spread COVID-19 in small communities, and we say tell them that we are taking tests before going they are much worried when we approach the community, they face the fear of having COVID-19 through us, so that's a big challenge. 

Doreen Tembo  10:08

I see. Thank you for that Clarice. And Thilini, what challenges did you have in Sri Lanka, were there similarities or were the issues quite different for you?

Prof.Thilini Agampodi  10:20

Yes Doreen so similarly, the pandemic disrupted the initial participant observation study where the researchers go and stay in the villages. so actually, our young PhD students, they were very happily accommodating, getting accommodated and studying the villages and suddenly there was this third wave I suppose, then they went for a country lockdown. So we have to get them back. And then we were thinking of, okay, what could we do to simulate participant observation, it's very difficult to engage, keep on engagement, engaging the communities contact with the communities. And one of the barriers that we faced was that we are the village people, the communities, villages did not have much of technology, smartphones or WhatsApp or any other sort of mode of technological digital communication. So what we did was we went for alternative methods. We introduced this diary writing and patient booklet writing, so that we can hear the perspective of patients with leishmaniasis and the perspective of community members, villagers about their village. So we designed diaries, so that they will write their daily day to day activities what they do usually in the village, what we are supposed to observe. And we get the diaries to purposefully select a different individuals, as Clarice mentioned, we have to sort of represent every community community groups. So that was very successful, I think we will have to have a very good picture description of the village as we mentioned that in the country at the beginning, so by going to the diaries, we were able to visualise what happens in the village in the day to day life. And we were able to get the these contextual inputs to the research. And even the patient booklets we included the sort of open ended questions to, for them to describe the patient journey, what they have faced, how it evolved the disease, and so on. So we were able to get a description. So as soon as the lockdown was lifted, we went to the communities and conducted interviews, including the statements made in the diaries, and the booklets. So that was the method we use to keep in touch with the community throughout the multiple waves that came from the pandemic, during the pandemic. 

Doreen Tembo  13:15

Thank you so much Thilini, that's really, really important, because in a sense, I think so many of us switched to using technology. But it's useful, so useful to see how different methodologies were used that didn't actually involve as much technology so that those that don't use technology weren't left behind in your research. So thank you so much for sharing that. And Clarice you would like to come in?

Clarice Mota  13:46

Yes, I remember that last year, we had lots of difficulties in approaching the communities because of the rains, we were talking on rural communities that the only access is by dust roads. And the rain really makes it impossible to to go it's it we had very hard weather last year, and we are hoping that these years going to be a little bit better. But this was very hard to to keep going to the communities with these environment situation. 

Doreen Tembo  14:29

And that's the strength of Applied Research in Health and Care in that you have to operate in the real world, isn't it and it's impossible to control a lot of the contextual situations that you've all highlighted, and it's amazing that the team has continued, despite all of these challenges. So I’m drawing to a close, it's been a fascinating discussion with all of you. I was wondering if each of you would like to highlight one tip, what would you tell someone? What advice would you give them if they were looking to embed community engagement and involvement in the research? So perhaps I can start with Thilini.

Prof.Thilini Agampodi  15:13

My experience was, it was an insightful moment, as ethnographers say, so I would advise to let the communities know that their voice is heard. I will give you the example as the moment which we got that insight. So during the pandemic, we could not go to the communities to hold meetings, because as, as an example, for as public personnel, we were not to sort of do abandoned things during the pandemic because we are health personnel. So but then when it was dying out, still, the villagers did not like us coming and getting the villages together. But then our project lead had this fantastic idea, okay, why not, we bring up the community, to the faculty, to the school medical school. So we brought actually two CAP groups to the medical school. And it was a wonderful moment. And they were they enjoyed, and they were very emotional. This, they were saying that it's once in a lifetime that you will be able to see a medical school. At that moment, in our discussion, we actually introduced all the members of the broader teams, different countries, and the project leads of UK and we just let them know that their voices are being heard every month, every week, by all the world throughout the world by four countries. That was a very empowering fact for the communities. And I think that made a lot of energy for them to work with this project and go on with this. And they were really thanking us, thank you for making our voices heard. And we feel very important in the, for the world living in the small rural village in Sri Lanka. So that we can use as a tactic and it's a very empowering tip for CEI. 

Doreen Tembo  17:34

Thank you so much Thilini because in the UK context, we actually tried to go into the community, but you've highlighted the power of actually flipping that perhaps and inviting the community in what would be called the research world. So that there isn't a divide between the community and the researcher. So the importance of seeing what would work for the community and not assuming what should be done. So, thank you so much for sharing that. And if we could ask Kelemework.

Kelemework Tafere Reda 18:05

The most obvious advice I can give is that you know, researchers have to be very honest and openly talk to people, they should avoid hierarchies, because normally, you know, there are two forms of knowledge, we have the scientific, technical knowledge, the local communities have their own local indigenous knowledge. And I mean, these two have to complement each other, just because we go to these areas from the university as scientists, this does not mean that we are better off in terms of knowledge and skills, I mean, this kind of attitude should be should be avoided. And we should be able to listen to the people listen to their priorities, empower them to do I mean things the way they want them to be done. And stuff like that, I mean, this is like a learning experience. So, we should be able to learn from their experience also is not should not be like a top down approach, but a bottom up approach should be participatory enough. 

Doreen Tembo  19:13

Thank you. And Clarice What tip would you have? 

Clarice Mota  19:18

Yeah, well I will say that to enter with the respect in the community observing listening to people do not assume you already know things. Take time to ask people when recognise local knowledge.  

Doreen Tembo  19:35

Thank you so much. And and Helen, what tip would you have?

Dr Helen Price  19:40

I think I agree very broadly with with the others, I think don't make assumptions. We had, we had a plan at the beginning of how we would do everything and we've had to adapt and be flexible. And with all the challenges that we've had, we've had to, we've had to rethink many times, and to use the methods that work best in each situation.

Doreen Tembo  20:10

That is, that is so important. It's very difficult to plan things and have things go to plan at the best of times, nevermind  pandemics and wars and, and unrest, and also environmental challenges. So I would very much like to congratulate the team on the fantastic work that you're doing, engaging communities. So thank you all for what's been such a great and insightful discussion. And I'd really like to say a huge thank you from all of us as well to you, listeners, for being here with us. So please do share, tweet and tune in to the other podcasts in the series. And do let us know what you think by sending an email to social.media@nihr.ac.uk. So that's it from all of us. Thank you again for joining us and enjoy the rest of your day.