In this episode, we discuss meaningful participation and inclusion when working with marginalised communities. We draw on research approaches from the Reducing the Burden of Severe Stigmatising Skin Diseases (REDRESS) research programme that aims to reduce illness, stigma, social exclusion, and poverty caused by severe stigmatising skin diseases (SSSDs) in Liberia. Since 2019 REDRESS has been co-developing new knowledge together with researchers, patients and programme implementers that directly respond to priority health needs detailed in the country’s ‘Investment Plan for Building a Resilient Health System’.

Hannah Berrian who is a Research Fellow for the Patient Engagement and Person-Centred Approaches thematic area for REDRESS and Shahreen Chowdhury, a researcher and PhD student at the Liverpool School of Tropical Medicine join us in a discussion about participation and inclusion and how these impact the partnerships and power dynamics that exist when trying to improve the health and wellbeing of marginalised people.

Episode guests:

Miss Hannah Berrian - Research Fellow, UL-PIRE Africa Center

Hannah Berrian obtained a Master’s degree in Public Health (MPH) from Cuttington Graduate School of Professional Studies in Liberia. She served as Liberia’s Mental Health Research Capacity Building Coordinator for Youth FORWARD, the U.S.-National Institute of Mental Health (NIMH) funded project from a collaboration between the Boston College of Social Work in Massachusetts, U.S., College of Medicine of the Allied Health Sciences (CoMAS) of the University of Sierra Leone, and UL-PIRE Africa Center at the University of Liberia, respectively.

She has several years of professional experience in project management, qualitative and quantitative research, programme implementation, qualitative data analysis, and building capacity for mental health research, among others. Hannah is a Research Fellow for the Patient Engagement and Person-Centred Approaches thematic area on Health Systems Strengthening for Reducing the Burden of Severe Stigmatizing Skin Diseases (REDRESS) consortium.

Ms Shahreen Chowdhury - Research Assistant, Liverpool School of Tropical Medicine

Shahreen Chowdhury is a social scientist, with a background in public health and geography. She currently works as a research assistant and PhD student at the Liverpool School of Tropical Medicine. She obtained her Masters in Public Health in International Development at the University of Sheffield and has varied local and international NGO experience in diverse settings on community health programmes.

Shahreen is particularly interested in the links between equity, mental health and disability inclusion, and community based participatory research. Her PhD explores mainstreaming the rights of people with psychosocial disabilities in Bangladesh, Liberia and Lebanon. In her current work, Shahreen is passionate about using creative participatory methods to amplify the voices and experiences of vulnerable groups affected by chronic illness and disability. Shahreen has extensive experience in working with co-researchers using photovoice, storytelling and art based participatory methods. Shahreen works in Neglected Tropical Disease programmes in West Africa and South Asia with a focus on co-production, designing, implementing and evaluating case detection and community based psychosocial support systems.

Useful links:

• DOWNLOAD A TOOLKIT FOR PARTICIPATORY HEALTH RESEARCH METHODS - Download and access a toolkit of PHR paradigms, methodologies and methods that can be selected and applied by researchers aiming to maximise inclusion, participation, and the achievement of more equitable research partnerships.
• Community Engagement - REDRESS Liberia - Access the REDRESS photovoice booklets here and find more about REDRESS' approach to community engagement and involvement (CEI).

Want to hear more podcasts like this?

Follow Connecting Citizens to Science on your usual podcast platform or YouTube to hear more about the methods and approaches that researchers apply to connect with communities and co-produce solutions to global health challenges.

The podcast covers wide ranging topics such as NTD’s, NCD’s, antenatal and postnatal care, mental wellbeing and climate change, all linked to community engagement and power dynamics.   

If you would like your own project or programme to feature in an episode, get in touch with producers of Connecting Citizens to Science, the SCL Agency.  

Kim Ozano: 00:00:04

Hello, and welcome to the Connecting Citizens to Science podcast.

Kim Ozano: 00:00:07

I'm your host, Dr.

Kim Ozano: 00:00:08

Kim Ozano, and this is a podcast where we discuss how researchers and scientists connect with communities and people across the globe to solve challenges together.

Kim Ozano: 00:00:18

If you have an interest in co-production, community engagement and involvement, community participation, or participatory research, then this is the podcast for you.

Kim Ozano: 00:00:27

We hope you enjoy this episode and don't forget to like, share, rate, and subscribe.

Kim Ozano: 00:00:38

In today's episode, we are discussing a really important topic, meaningful participation and inclusion when working with marginalised communities.

Kim Ozano: 00:00:46

We hear these terms all the time, but what does this really look like in practice?

Kim Ozano: 00:00:51

How do we ensure that power dynamics that are often unequal are managed and that the relevant stakeholders are at the table?

Kim Ozano: 00:00:59

We're going to be exploring that together with a research programme called REDRESS.

Kim Ozano: 00:01:04

REDRESS aims to reduce illness, stigma, social exclusion, and poverty caused by severe stigmatising skin diseases in Liberia and many people affected by these stigmatising skin diseases lack access to health and social services and this results in significant physical and psychosocial consequences, as well as complex treatment journeys and catastrophic social economic impacts.

Kim Ozano: 00:01:30

Severe stigmatising skin diseases, by definition, are neglected tropical diseases, or NTDs, with signs on the skin, and include lymphatic filariasis, leprosy, buruli ulcer, yaws, and onchocerciasis.

Kim Ozano: 00:01:43

Today, Hannah Berrian, who is a research fellow for the patient engagement and person centered approaches thematic area for REDRESS and Shahreen Chowdhury, a researcher and PhD student at the Liverpool School of Tropical Medicine, who is also passionate about participatory research, join me in a discussion about participation and inclusion, and how these impact on the partnerships and power dynamics that exist when trying to improve the health and well being of marginalised people.

Kim Ozano: 00:02:10

. Shahreen speaks to us from Liverpool and Hannah from Liberia.

Kim Ozano: 00:02:14

We asked them both to tell us a bit more about the work that they've been doing and why they are so passionate about participation inclusion.

Shahreen Chowdhury: 00:02:21

I currently work as a researcher and PhD student at the Liverpool School of Tropical Medicine and it's been a real honour to work on REDRESS.

Shahreen Chowdhury: 00:02:29

My area of focus within the programme has been particularly on mental health and the inclusion of marginalised populations, such as people affected by stigmatising skin diseases.

Shahreen Chowdhury: 00:02:40

And this has a real focus on holistic care and also on disability inclusion and that is a real reason why I'm so passionate about participatory approaches because I feel that they really bring, you know, inclusion and ways to be accessible and how we can really include people within REDRESS in meaningful ways.

Hannah Berrian: 00:02:59

I am Hannah Berrian.

Hannah Berrian: 00:03:01

I'm a research fellow for patient engagement and person centered approaches thematic area on the REDRESS project.

Hannah Berrian: 00:03:10

In this thematic area, I collaborate with persons affected in the community to ensure the research approaches are guided and also responsive to their needs and priorities.

Hannah Berrian: 00:03:24

REDRESS really considers participation and inclusion as something very key.

Hannah Berrian: 00:03:29

At the initial stage of the project, we collaborate with the community health workers.

Hannah Berrian: 00:03:35

We also recruited, uh, persons affected as co-researchers.

Hannah Berrian: 00:03:40

And those, uh, persons affected, they were trained on the different research methods that we are doing on the project.

Hannah Berrian: 00:03:48

And also, we work with other key stakeholders like the informal health providers, the community leaders.

Hannah Berrian: 00:03:54

So all of those persons, they were included on a REDRESS project, and they all participated in a key learning from, uh, those community health workers as co-researchers will also be beneficial to their county health team as they implement their different roles.

Hannah Berrian: 00:04:12

I was motivated to participate in this research project because I believe my capacity and skills will be built and I would also contribute to strengthening the health system and improving the lives of persons affected by skin NTD in my country.

Kim Ozano: 00:04:31

One of the things that REDRESS did early on in the programme was to develop a community engagement and involvement strategy.

Kim Ozano: 00:04:38

And they set out their definition of what this means as the meaningful, respectful, and fit for purpose involvement of a range of community members in one or more aspects of the research project.

Kim Ozano: 00:04:51

We wanted to know a little bit more about what that looked like in practice.

Kim Ozano: 00:04:55

Shahreen tells us.

Shahreen Chowdhury: 00:04:56

So when we talk about participation and inclusion within REDRESS, I guess we can talk about it from inclusion first.

Shahreen Chowdhury: 00:05:03

So really, this relates to who do we want to include within the research process.

Shahreen Chowdhury: 00:05:09

And so within REDRESS, we really thought about what gaps there were and who we need to work with.

Shahreen Chowdhury: 00:05:14

And of course, as mentioned, we worked with people with lived experience and this is people affected by stigmatising skin diseases.

Shahreen Chowdhury: 00:05:22

But this also included actors at the community level.

Shahreen Chowdhury: 00:05:24

So, for example, community health workers, community health assistants, but then also, um, different health actors at the different levels of the health care system, as well as the Ministry of Health.

Shahreen Chowdhury: 00:05:37

We really thought about how can we then include these people, um, you know, in meaningful ways.

Shahreen Chowdhury: 00:05:43

And we always talk about meaningful ways, but what does this actually mean?

Shahreen Chowdhury: 00:05:46

And this really means participation in how can people be involved in the research process, in actually actioning change and having, you know, a part in the research process.

Shahreen Chowdhury: 00:05:57

And so the way we designed REDRESS was using that participatory approach.

Shahreen Chowdhury: 00:06:01

So, first working together to find out the gaps.

Shahreen Chowdhury: 00:06:06

And then working together again to co-develop solutions, and so we then co-developed solutions for different areas, thematic areas within REDRESS.

Shahreen Chowdhury: 00:06:15

And this included case management, case detection, but also, managing mental health, um, and reducing stigma, and also developing peer support groups, and this was all co-developed with these actors.

Shahreen Chowdhury: 00:06:31

So once we had to use these participatory methods, research methods, were able to then co-develop these solutions, implement them and then evaluate them.

Shahreen Chowdhury: 00:06:40

And this really included working with all stakeholders to attend county level dissemination workshops.

Shahreen Chowdhury: 00:06:47

We also set up technical advisory boards, working with different groups, such as a mental health working group, and this included members of the NTD programme, but also the mental health programme within the Ministry of Health.

Shahreen Chowdhury: 00:07:01

All the tools that we developed were then sense checked with end users.

Shahreen Chowdhury: 00:07:05

So, people affected by skin diseases, but also the community health workers who would be using these tools.

Shahreen Chowdhury: 00:07:12

We also set up a community advisory board, which included people affected and also informal providers such as traditional and faith healers.

Shahreen Chowdhury: 00:07:21

They have been really involved throughout the whole process of the research.

Shahreen Chowdhury: 00:07:25

We have been asking them for guidance as well, and their knowledge has been really valuable throughout.

Kim Ozano: 00:07:30

This collaborative approach was really quite admirable.

Kim Ozano: 00:07:34

And we really wanted to know a little bit more about how persons affected responded to being part of a research programme.

Kim Ozano: 00:07:43

We all know that when we involve co-researchers from the community, that there's a level of capacity strengthening that both us as researchers and our co-researchers need to go through so that we can work together in a meaningful way.

Kim Ozano: 00:07:56

We asked Hannah, how they responded when asked to be involved in a research project.

Hannah Berrian: 00:08:01

This was the first of its kind for me to support and build persons affected by skin NTD skills and capacity.

Hannah Berrian: 00:08:11

Persons affected, uh, that we recruited on the REDRESS project was very excited to participate and also passionate about learning.

Hannah Berrian: 00:08:24

Our persons affected, some came with high school diploma that and, uh, they could read and write.

Hannah Berrian: 00:08:31

So we were able to train them on the different research methods that we are using, for example, on a photovoice on the reflective diary, on collecting health facility and health workers data.

Hannah Berrian: 00:08:48

So we are able to train them and some of them also have some involvement in their different community activities.

Hannah Berrian: 00:08:55

So they had a strength in that and, uh, those persons affected, they were able to corroborate during a different capacity building section.

Hannah Berrian: 00:09:05

So coupled with the training that we provided for them, they were very excited to participate in the research process and they are very excited to see the outcome of REDRESS Project.

Hannah Berrian: 00:09:17

It's, uh, useful to their future career in a different community.

Hannah Berrian: 00:09:23

It was a very exciting experience and moment for me being able to build the skills of those persons affected.

Hannah Berrian: 00:09:30

Some of them told me that in their life, they have not participated in a research but now they are able to use research tools, they are able to conduct interviews, and they do have skills that people can call upon.

Hannah Berrian: 00:09:45

If there is another project in a different counties, they are available to work on it and they do have skills that could be transferred to those different projects.

Kim Ozano: 00:09:55

Hannah many talks about photovoice.

Kim Ozano: 00:09:57

Photovoice is a creative participatory method where participants are given cameras or use their phones to take photographs of the reality and to provide narratives alongside that.

Kim Ozano: 00:10:07

REDRESS supported participants, co-researchers and people affected by severe stigmatizing skin diseases to take ownership of their stories and be the storytellers of their own narratives.

Kim Ozano: 00:10:19

Co-researchers were recruited as part of the core research team.

Kim Ozano: 00:10:23

And they then supported and trained other people affected within their communities as photovoice participants to take photographs and articulate their meanings.

Kim Ozano: 00:10:32

You could see the results of this in photovoice booklets at the REDRESS website.

Kim Ozano: 00:10:36

So do check that out.

Kim Ozano: 00:10:38

We wanted to understand a little bit more about how power dynamics were managed within the REDRESS programme.

Kim Ozano: 00:10:45

We are aware that when you bring people effected, like co-researchers in this study with health system stakeholders, there can be power inequities that can play out and limit the participation of some of the research members.

Kim Ozano: 00:10:59

We asked Shahreen how these were managed in REDRESS.

Shahreen Chowdhury: 00:11:02

Managing power dynamics, I have to say, was really an iterative process and we really did a lot of learning along the way, but I think what really helped us was at the beginning of REDRESS, we brought all stakeholders together and we decided to co create some values.

Shahreen Chowdhury: 00:11:18

And I think this really set up, you know, the approach that we would all take, and this included sharing of power.

Shahreen Chowdhury: 00:11:24

You know, the idea that the research is jointly owned and that we all work together for a shared understanding and building and maintaining relationships is such a key part in that.

Shahreen Chowdhury: 00:11:34

This really does take time, and really being able to respect and value the knowledge of everyone involved in the research.

Shahreen Chowdhury: 00:11:41

This really includes valuing local knowledge.

Shahreen Chowdhury: 00:11:44

So, we worked with traditional healers, faith healers as they are often the first point of contact for many persons affected, and we always assume there may be a gap between the formal health system and the informal health system.

Shahreen Chowdhury: 00:11:57

So this was something that we decided to really approach carefully within REDRESS, and this included having open conversations.

Shahreen Chowdhury: 00:12:03

So for example, community health workers, how would they like to be involved and the same for traditional and faith healers, you know, how would they like to be involved and what's important to them?

Shahreen Chowdhury: 00:12:13

What challenges do they face?

Shahreen Chowdhury: 00:12:15

I think what's really important in managing power dynamics is again, thinking about ways we communicate.

Shahreen Chowdhury: 00:12:20

So the way we would communicate with a formal health system, for example, the language, the jargon we may use, it was really important for us to make sure that we were using local terminologies, especially specific conditions, for example, buruli ulcer, that is known as Bigfoot.

Shahreen Chowdhury: 00:12:38

We really learned from the expertise of our co-researchers, as Hannah has mentioned.

Shahreen Chowdhury: 00:12:43

It was really about multi-directional learning and capacity building on both sides, really.

Shahreen Chowdhury: 00:12:49

We learned so much from our co-researchers, just as we were able to also share our experiences around different participatory methodologies, thinking about learning from each other, and also thinking about different ways to communicate really helped think about the different ways we could manage those power dynamics.

Shahreen Chowdhury: 00:13:06

And again, it's not always an easy answer, but we had to really think through different ways we could do this.

Shahreen Chowdhury: 00:13:12

For example, at the midterm review meeting, where we all decided to look through how the intervention was going, and we realised that some of the PowerPoint presentations may not be as well received to our co-researchers and informal health providers who may not have the same level of literacy.

Shahreen Chowdhury: 00:13:29

So then we decided to break up the agenda into little world cafe sessions where we would just break up into small groups and have discussions rather than a PowerPoint presentation.

Shahreen Chowdhury: 00:13:39

And I think that really helped because we then thought about communication and I think we got a lot more fruitful conversations this way and we were able to get feedback as well.

Shahreen Chowdhury: 00:13:47

So it was a different stage of learning and we've been continuing to learn throughout the process.

Kim Ozano: 00:13:53

Working with traditional and faith healers is quite unique to REDRESS.

Kim Ozano: 00:13:57

Hannah told us a bit more about what it was like to work so closely with this community.

Hannah Berrian: 00:14:02

Working with, uh, traditional and faith healers was a great experience for me.

Hannah Berrian: 00:14:07

From the onset of their engagement to participate, I was a little bit afraid, but they are very good and interesting people to work with.

Hannah Berrian: 00:14:17

During the recruitment process and meeting, they informed me that people don't usually recruit them on projects, so they were happy to be a part of the REDRESS project.

Hannah Berrian: 00:14:28

They were recruited to participate and we trained them on photovoice and reflective diary and, uh, where they reflected on how they have provided care for persons affected by skin NTDs.

Hannah Berrian: 00:14:43

They were also trained on a REDRESS intervention job aid.

Hannah Berrian: 00:14:48

And also, uh, where they are to identify patients and refer them to the health facility.

Hannah Berrian: 00:14:56

So they agreed to do that as part of their job.

Hannah Berrian: 00:14:59

When we were doing a follow up visit with them, all of them were available doing a photovoice follow up.

Hannah Berrian: 00:15:06

And they participated in the dissemination meeting where they shared their work back to the community.

Hannah Berrian: 00:15:14

So, we have a very good relationship with them.

Hannah Berrian: 00:15:18

Sometimes they call me and I also call them.

Hannah Berrian: 00:15:21

Working with the traditional and faith healers was a very good experience for me.

Kim Ozano: 00:15:26

Shahreen and Hannah shared a lot with us about how co-researchers were involved in the research process of collecting data.

Kim Ozano: 00:15:34

But we also wanted to understand how we can work together with communities to analyse data together.

Kim Ozano: 00:15:39

Shahreen tells us the process of doing this in REDRESS.

Shahreen Chowdhury: 00:15:43

So the co-analysis process has been really interesting and there are different layers to it and we've done this in REDRESS and also my PhD too.

Shahreen Chowdhury: 00:15:51

After the participatory methods had been conducted there was also a reflective session afterwards with our co-researchers asking them to reflect on the visual output that they had produced and what it really spoke to.

Shahreen Chowdhury: 00:16:05

And so we had the transcript, but then we also had the imagery along with the reflective session as well.

Shahreen Chowdhury: 00:16:12

So the first session was with us as a research team, we worked together to read through the different transcripts, we then wrote down on sticky notes emerging themes that were coming through the transcripts, and then we stuck these on a wall, and grouped them together to see if we were coming up with similar things.

Shahreen Chowdhury: 00:16:30

Then the second half was to then do the same session with co-researchers, a lot of our methods aren't really conducive to different groups of varying literacy levels, so the way we adapted the first analysis, instead of reading through long transcripts, some of the co-researchers listened to audios.

Shahreen Chowdhury: 00:16:48

And so listening to the audio, we just had some guiding questions, what is the person saying in their story?

Shahreen Chowdhury: 00:16:55

Or what has been mentioned around emotions?

Shahreen Chowdhury: 00:16:58

Or what has been mentioned around barriers faced in accessing care?

Shahreen Chowdhury: 00:17:02

This really brought out, um, really interesting themes.

Shahreen Chowdhury: 00:17:06

Again, this was a way of triangulating the data.

Shahreen Chowdhury: 00:17:08

So we found similar themes coming through, and that really kind of helped with, um, rigor in our research, but it also brought up some things that the co-researchers were able to give different perspectives as well.

Shahreen Chowdhury: 00:17:20

Once they had also written the post it notes and sometimes, some co-researchers were able to write on the post it notes themselves, but then they also had research fellows and us as well to support them.

Kim Ozano: 00:17:31

So there, we have it some excellent examples of how we can work together with our communities to not only collect data through capacity strengthening, but also to co-analyse that data together, so we can be ensured that our interpretation, perceptions and dissemination are accurate.

Kim Ozano: 00:17:48

This is especially important when working with marginalised communities, such as people affected by severe stigmatising skin diseases.

Kim Ozano: 00:17:56

To sum up the episode we asked Shahreen and Hannah, what advice they have for others who want to be more inclusive in their research programmes.

Shahreen Chowdhury: 00:18:03

The advice I would give for anyone else would like to be more inclusive in their research would be from the outset, to really think about diverse perspectives and embrace them and this includes people with lived experience and also engaging in communities in a way that moves beyond extraction and really is collaborative and that you can address power dynamics.

Shahreen Chowdhury: 00:18:26

This is always an iterative process and co-creating values can really help this, and especially in creating those accessible spaces through the ways in which we communicate, the ways in which we design methodologies, and work together.

Shahreen Chowdhury: 00:18:40

So, I really think that these are the main learnings for me.

Shahreen Chowdhury: 00:18:43

And I always feel that we learn more from our challenges.

Shahreen Chowdhury: 00:18:46

So, I think building in that time to build that trust, and also building in time to be reflexive, and to be able to adapt methods and learning along the way is one of the biggest lessons that I've had.

Hannah Berrian: 00:18:58

What I have learned about participation and inclusion is that it is very helpful to a research project where it allows stakeholders to be more engaged and feel part of the research project.

Hannah Berrian: 00:19:13

This is what we did in the REDRESS project.

Hannah Berrian: 00:19:16

We collaborated with all levels of participants, the national level, where we collaborated with key stakeholders, like the mental health division on the community health division.

Hannah Berrian: 00:19:29

We also collaborated with the county health team, the community leaders, the traditional and faith healers, and even persons affected by skin NTDs.

Hannah Berrian: 00:19:42

So I will advise others to ensure the research is inclusive of the end users, and this will help them to give them more positive outcome of the project.

Hannah Berrian: 00:19:53

And the end users will also feel that the project is their own and will make them to participate instead of them saying that, you know, the project belongs to the Government or donors.

Kim Ozano: 00:20:06

Some excellent advice there.

Kim Ozano: 00:20:08

So thank you to our guests for such an insightful discussion and sharing of experiences of working with people who are marginalised and have lived experience of severe stigmatising and skin diseases.

Kim Ozano: 00:20:21

If you want to know more about the REDRESS programme, go to REDRESSliberia.org and to have a look at their community engagement and involvement strategy, you can also see interviews from some of the co-researchers within that as well.

Kim Ozano: 00:20:36

So do check it out.

Kim Ozano: 00:20:38

And to our listeners as always thank you for your dedication and listening to this episode.

Kim Ozano: 00:20:43

Do like, share, rate and subscribe so that we can continue to collect voices and experiences such as those from today, and really drive forward the agenda to be more inclusive of communities.

Kim Ozano: 00:20:56

Until next time, have a good day.