Episode 55
Engaging Advocates With Research to End TB
In this episode we are celebrating World TB Day, this year’s campaign is ‘YES! We Can End TB’ and is all about solidarity and collective action. It centres on the increased engagement of those affected by TB, communities and civil society that are leading the movement towards ending this disease.
This episode features the LIGHT consortium which aims to provide new evidence on the effectiveness of different gender-sensitive pathways and approaches to health for those with TB in urban, HIV-prevalent settings across Uganda, Nigeria, Malawi and Kenya. Our co-host Samara Barnes, who has lived experience of TB in the UK, speaks with researchers Toyosi Adekeye in Nigeria and Jasper Nidoi in Uganda from the LIGHT consortium about the ways they are enaging with affected communities in their work. Samara also shares her experience from the UK and the conversation reflects on the differences of TB across contexts.
In this episode we are celebrating World TB Day, this year’s campaign is ‘YES! We Can End TB’ and is all about solidarity and collective action. It centres on the increased engagement of those affected by TB, communities and civil society that are leading the movement towards ending this disease.
This episode features the LIGHT consortium which aims to provide new evidence on the effectiveness of different gender-sensitive pathways and approaches to health for those with TB in urban, HIV-prevalent settings across Uganda, Nigeria, Malawi and Kenya. Our co-host, Samara Barnes, who has lived experience of TB in the UK speaks with researchers Toyosi Adekeye in Nigeria and Jasper Nidoi in Uganda from the LIGHT consortium about the ways they are engaging with affected communities in their work. Samara also shares her experience from the UK and the conversation reflects on the differences of TB across contexts.
This episode features:
Samara Barnes Affected Community Co-Lead at the UK Academics and Professionals to End TB (UKAPTB)
Samara is an Affected Community Co-Lead at the UK Academics and Professionals to End TB (UKAPTB). She was diagnosed with active pulmonary TB in late 2015 and it was discovered she was also drug resistant as her treatment went on.
Until that point, Samara knew little about the illness apart from the fact that her Grandad had died of TB many years previously. Samara has raised money for TB Alert and has been part of their peer supporter programme too. She has also studied and written papers on the Global disparities in TB treatment. It is important for Samara to raise awareness of this illness, be an advocate for reducing the stigma surrounding it and to encourage decision makers in the UK to ensure they keep to their commitment of a year on year reduction of TB and contribute to the WHO's commitment to eliminate TB by 2035. Samara works for a national children's charity and is also a borough and county councilor.
Dr Jasper Nidoi - Early Career Researcher, Liverpool School of Tropical Medicine, U.K and Makerere University Lung Institute, Uganda.
Jasper Nidoi is a Ugandan medical doctor with specialist training in health economics and health systems and policy research from Karolinska Institutet, Sweden. For over 5 years, she has been involved in the design and implementation of clinical trials that have evaluated drugs for the prevention and treatment of infectious diseases in Uganda. She is a health economist on a clinical trial that is evaluating the effectiveness and cost-effectiveness of standardized medication for MDR-TB. She was a co-investigator in a study that evaluated the impact of socio-economic factors on tuberculosis treatment outcomes in one of the poorest regions in Uganda.
Her research interests are in the socio-economic determinants of health as they pertain to tuberculosis and the use of decision-analytic models to systematically synthesise data for the economic evaluation of healthcare interventions to guide policy that maximises resource allocation in the presence of uncertainty.
Dr Jasper Nidoi joins the LIGHT Consortium as a researcher where she will contribute to generating evidence on gender-sensitive pathways and approaches for TB to increase the proportion of men in urban areas with TB who successfully complete screening and initiate treatment.
Dr Toyosi Adekeye - Senior Lecturer Department of Community Medicine and primary Healthcare Bingham University and Research Uptake Manager, LIGHT Consortium Zankli Research Centre (ZRC) Nigeria
Dr. Adekeye is a Medical Doctor and Public Health expert who serves as a senior lecturer in the Department of Community Medicine and Primary Healthcare and the LIGHT consortium Research Uptake Manager, at the Zankli Research Centre (ZRC), Bingham University, New Karu, Nasarawa State where he manages and coordinates all research activities and inputs across the LIGHT consortium in Nigeria. He leads a team that strives to generate new evidence on options and approaches to maximize male access to healthcare services for TB in urban, HIV-prevalent settings. The evidence generated will inform better gender-sensitive and pro-poor policies that will enable better access to TB care.
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Transcript
Hello listeners and welcome to the Connecting Citizens to Science Podcast.
Kim Ozano:This is a podcast about connecting communities and people to research and science so that we can make sustainable global changes.
Kim Ozano:In this episode, we are celebrating World TB Day.
Kim Ozano:This year's campaign is, yes, we can end TB, and it's all about solidarity and collective action.
Kim Ozano:It centers on the increased engagement of those affected by TB, communities and civil society that are leading the movement towards ending this disease.
Kim Ozano:We have Samara Barnes with us who we're gonna meet in a moment who has lived experience of TB in the UK.
Kim Ozano:Our guests, our researchers, Toyosi Adekeye, and Jasper Nidoi from the LIGHT Consortium at the Liverpool School of Tropical Medicine.
Kim Ozano:Jasper is a Ugandan medical doctor with specialisms in health economics and health systems and policy research and in the LIGHT Consortium, she is contributing to generating
Kim Ozano:Toyosi is also a medical doctor and public health expert who serves as a senior lecture in the Department of Community Medicine and Primary Healthcare,
Kim Ozano:This is a unique opportunity for cross-country researchers and advocates to discuss the similarities and differences between countries.
Kim Ozano:So let's meet our co-host, Samara Barnes.
Kim Ozano:Samara is the affected community co-lead of the organisation, UK Academics and Professionals to End TB..
Kim Ozano:She was diagnosed with TB in late 2015 and later discovered that she was also drug resistant.
Kim Ozano:She has been very active and has raised money for TB Alert, the UK's national TB charity, and has been part of their peer support program.
Kim Ozano:She has also studied in written papers on the global disparities in TB treatment.
Kim Ozano:She also works for the National Children's Charities and is a borough and county counsellor.
Kim Ozano:Samara, welcome to the podcast.
Kim Ozano:You are a very busy person!
Kim Ozano:Tell us a bit about yourself and the journey that you have been on.
Samara Barnes:Hi Kim.
Samara Barnes:Thank you.
Samara Barnes:That was, um, that was pretty much everything about me.
Samara Barnes:I am really busy, but being an advocate for people who have had TB is really important to me.
Samara Barnes:I think mainly because someone like me was never expected to get TB.
Samara Barnes:It wasn't particularly prevalent in my area.
Samara Barnes:I, I'd had, um, the vaccine when I was younger, so everyone thought that there were no markers there for me to get TB, but, you know, I
Samara Barnes:What was really noticeable when I was diagnosed is that the right questions weren't asked.
Samara Barnes:So it took a long time to get the diagnosis, which probably, um, led to the fact that I was active and quite poorly by the time it was diagnosed.
Samara Barnes:So I'm really keen in early diagnosis and raising awareness of what the symptoms are so people, whoever they are, have that in their mind when they have conversations with the GP.
Samara Barnes:That was a really long statement.
Samara Barnes:I'm sorry about all that, I've got a lot to say!
Kim Ozano:No, not at all.
Kim Ozano:So in 2015, was that when the diagnosis happened?
Samara Barnes:It was right at the very, very back end of that year and I'd been poorly for quite a long time.
Samara Barnes:I'd seen the doctor on numerous occasions and I got significantly worse as the time went on.
Samara Barnes:I was diagnosed with chest infections.
Samara Barnes:I was diagnosed with asthma, and it was actually only when they were further investigating asthma that they sent me for MRI scans and x-rays and they noticed that it was definitely not asthma.
Samara Barnes:It took a lot of prodding and a lot of standing in doctor's waiting rooms asking for help to get that diagnosis.
Kim Ozano:Okay, and then from 2015 you got your diagnosis and then underwent treatment for a period of time?
Samara Barnes:I started the treatment early in the January, and actually the first part of that treatment regiment made me poorlier than having the TB.
Samara Barnes:It was very harsh.
Samara Barnes:I was sleeping for nearly 20 hours a day, struggling.
Samara Barnes:I didn't eat, I lost 10 pounds in the first couple of weeks.
Samara Barnes:It was really really tough and it made me realise that unless you have certain scaffolding around you and support, that is really difficult to keep on that regiment and I can
Kim Ozano:So you've had your treatment and you're with us today, and how did you become an advocate after being treated?
Samara Barnes:So TB alert were the organisation who offered me support when I first received my diagnosis because I didn't know anybody.
Samara Barnes:I don't even think at that point there was much on Facebook in terms of support groups.
Samara Barnes:They really helped me, and then I became a peer supporter for them.
Samara Barnes:I always knew that I wanted to do something else in terms of being an advocate for people with TB because I think it's so important, and especially during Covid
Samara Barnes:Obviously we were in, in unprecedented times, but nobody knew whether I should be isolating or not.
Samara Barnes:No one knew whether I was clinically, um, vulnerable or not.
Samara Barnes:It just made me really realise that there's so much around TB that we still don't know.
Samara Barnes:I mean, I'm saying this is a layperson, I'm sure the people that are on the call know, know so much more, but as a, as a layperson, it felt like there was such a
Kim Ozano:Thank you very much for sharing that journey with us to help our listeners to understand.
Kim Ozano:Toyosi and Jasper, do you have some questions for Samara around her journey from being diagnosed to becoming an advocate?
Toyosi Adekeye:Thanks Samara for sharing your experience with us and for being an advocate for tuberculosis.
Toyosi Adekeye:I think one of the questions I have for you is something I have witnessed with, uh, people who have had similar experiences, which is, how were you able to communicate what
Toyosi Adekeye:Did they really understand what you were going through?
Toyosi Adekeye:Did you get the support that was, that you felt was necessary?
Samara Barnes:That's a really excellent question, and actually, reflecting on that time is something that makes me want to be more of an advocate.
Samara Barnes:My granddad actually died of TB.
Samara Barnes:He died of TB before I was born.
Samara Barnes:He thought he caught it when he was in the RAF in, in Borneo.
Samara Barnes:So, for me and for my family, TB was a death sentence because that's all we knew.
Samara Barnes:So when I had to tell my Mum and I'm gonna be careful, I don't cry now, when I had to tell my Mum on Christmas Eve that I had TB, um, it was a very, very difficult
Samara Barnes:The misconceptions around TB were a big part and having to explain as I was learning to people that, in Britain, it's not the killer that it can be in other places were really
Samara Barnes:A lot of people didn't come and visit me even when I was no longer active.
Samara Barnes:People assumed I should be in a sanitarium.
Samara Barnes:People got quite cross when they were having to be tested because they spent time with me.
Samara Barnes:Not everybody, you know, not at all.
Samara Barnes:A lot of people were very supportive, but I was shocked at that.
Samara Barnes:But I suppose we saw that in the pandemic, didn't we, at first with, with Covid people getting quite angry.
Samara Barnes:I definitely think there needs to be a change in understanding.
Samara Barnes:I hope that answers that Toyosi.
Toyosi Adekeye:Yes, it does.
Toyosi Adekeye:Thank you very
Jasper Nidoi:It's not a question.
Jasper Nidoi:It's more of a comment about cross-learning froma low burden setting to a high burden setting as it is in, in Uganda, because we actually do have delays here as well.
Jasper Nidoi:A patient might see different doctors for the cough and maybe start from a drug store, just buy drugs because the controlling pharmacies is not,
Jasper Nidoi:So it's just to highlight the parallels and when they do access the, the public healthcare system or the formal healthcare system, there are some delays there as well.
Jasper Nidoi:So it's just to emphasise the cross-learning across both high burden settings and low burden settings on, you know, the index of suspicion among
Kim Ozano:Just to set Samara up, Toyosi, can you tell us a bit about the LIGHT Consortium and what the aims are, and then Samara over to you
Toyosi Adekeye:The LIGHT Consortium is an acronym for Leaving no one behInd - Transforming Gendered Pathways to Health for Tb.
Toyosi Adekeye:It's a consortium that consists of five countries, um, is led by the UK.
Toyosi Adekeye:There's Nigeria, Kenya, Uganda and Malawi.
Toyosi Adekeye:What we aim at doing is ensuring that our research can highlight or bring forth evidence that can improve access, uh, to TB care and prevention across these, uh, countries.
Kim Ozano:Over to you Samara.
Kim Ozano:You have two researchers here from different context who work in high TB prevalent areas, so please go ahead.
Samara Barnes:The thing that I'm really interested about, is the gender aspect.
Samara Barnes:So of all the types of inequalities around TB, I wasn't aware that there was a gendered inequality, so I'm really keen to hear a little bit more about that and to
Jasper Nidoi:Yes, Samara.
Jasper Nidoi:So, yeah, you're right.
Jasper Nidoi:Um, gender is not one of the really highlighted social determinants when it comes to TB, and the Stop TB partnership has actually led a community rights
Jasper Nidoi:So when we look at the global picture, TB is about 1.8 times the burden, 56% in men compared about 33% in women.
Jasper Nidoi:When we look at it globally, there is a discrepancy in terms of burden and gender.
Jasper Nidoi:Then when we also look at the missed TB cases, we estimate that about two thirds of the missed TB cases, um, are among men.
Jasper Nidoi:This is a really, really important area for us because each patient that you fail to identify and start treatment on time has the potential to spread this to so many people.
Jasper Nidoi:People who are close and dear to them, their families, their workmates, their communities in which they live.
Jasper Nidoi:It is very important that we identify the missed TB cases.
Jasper Nidoi:When we look at the gender differences, women do face barriers in accessing the healthcare system, we, we cannot put that aside, but, um, as LIGHT, we also want to look at men because when you look
Jasper Nidoi:If I could speak for Uganda, the Ugandan society's patriarchal in nature so the responsibilities that a man has to face, you know, sometimes you find that health seeking is not a priority.
Jasper Nidoi:So in Uganda we're trying to look at ways in which we can focus on the healthcare system and try to introduce an intervention or a solution to
Jasper Nidoi:I don't know if Toyosi wants to add something about Nigeria?
Toyosi Adekeye:Men oftentimes have responsibilities that preclude them from visiting hospitals or the doctors, and they end up going to patent medicine
Toyosi Adekeye:Now we know that tuberculosis is a social problem, a social disease, and it affects people who are more in the lower socioeconomic class in high burden areas particularly.
Toyosi Adekeye:So these are people that are already burdened by economic factors and other social issues, and missing one day of work can further plunge them deeper into such economic crisis.
Toyosi Adekeye:So they don't even take that risk of assessing healthcare because of the time they have to invest in that.
Toyosi Adekeye:What this does, is that it propagates the transmission of the disease.
Toyosi Adekeye:And so what we are doing in the Light Consortium in Nigeria is to investigate and identify those barriers that can, that hinders particularly men, women and children
Samara Barnes:That's really interesting.
Samara Barnes:Is there appetite from the governments in the countries that you are working in to do this piece of work and to make those significant health changes?
Toyosi Adekeye:I can speak for Nigeria, and I think it's similar across the other African countries that are in the consortium.
Toyosi Adekeye:In TB research and programming is hugely donor funded in Nigeria, and it is handled by our national tuberculosis programme, which is a little different if it could be handled by, say, the
Toyosi Adekeye:So there are those challenges that exist, uh, that we're currently trying to overcome.
Toyosi Adekeye:The government is interested in solving some of these problems.
Toyosi Adekeye:The only challenge is that the finances are not adequate.
Toyosi Adekeye:So it depends hugely on donors to get this work done.
Jasper Nidoi:Just to build onto what Toyosi has said, a lot of the TB work is donor funded and what we're trying to do in Uganda with the healthcare systems,
Jasper Nidoi:We believe starting with the healthcare workers and finding out what challenges they think TB patients face and, and involving them in the
Jasper Nidoi:It'll improve sustainability.
Jasper Nidoi:So this co-creation process is one of the solutions that we're trying to employ in Uganda to try to overcome that bottleneck.
Jasper Nidoi:And if I could just also add something about timing, the timing is right because we've just finished the community rights and gender assessment so there is this advocacy
Jasper Nidoi:So, uh, right now the timing in Uganda is really, really good so the solutions that we develop under LIGHT can really go into these available uptake streams.
Samara Barnes:It's fascinating.
Samara Barnes:That's really interesting.
Samara Barnes:Thank you.
Toyosi Adekeye:I was just going to, uh, build a little on what Jasper had mentioned concerning the co-creation of the solutions to these challenges or barriers that affect the TB burden in Nigeria.
Toyosi Adekeye:One of the things we've done across the countries involved in our consortium is a political economic analysis.
Toyosi Adekeye:What we know is that a lot of times we conduct research with the hope that it will translate into either policy or practice, but there's
Toyosi Adekeye:So what we have tried to do is to look at the political, uh, sphere and the economic aspects that may contribute to this burden.
Toyosi Adekeye:We're trying to navigate around those and to solve those problems using research.
Toyosi Adekeye:So that once we complete our research, we can quite quickly translate them into policies that will now guide our practices.
Kim Ozano:I think that's really good to kind of set us up to thinking about methods as well.
Kim Ozano:So Jasper, you mentioned community rights agenda there, making sure that communities are part of the co-production process.
Kim Ozano:Our listeners, they're familiar with photovoice, but how are you using photovoice in this project and, could you explain it for Samara who might be new to this kind of method in research?
Toyosi Adekeye:Absolutely.
Toyosi Adekeye:I'd love to do that.
Toyosi Adekeye:Photovoice is a visual research methodology where we use pictures to tell stories.
Toyosi Adekeye:Many times when you conduct research, they're just limited types of questions and things you can ask, but when you discuss with your community, and have them take pictures
Toyosi Adekeye:They take pictures that can then explain what those barriers are.
Toyosi Adekeye:It is so fascinating the kind of information you get from these pictures.
Toyosi Adekeye:So the process is pretty simple, we have participants from the community, guide them on how to take pictures, just the ethics of photography, especially
Toyosi Adekeye:And they go with the cameras, take a bunch of pictures of things that have interested them, things that defined or are in line with what we have asked them to take.
Toyosi Adekeye:Things that would normally not be able to relate to on paper.
Toyosi Adekeye:So they take those pictures, uh, and then we review the pictures alongside the participants and they tell us what they were thinking when they took those photos.
Toyosi Adekeye:That now provides an avenue where we can either publish that or have an exhibition where the policy makers or people that have influence on those
Toyosi Adekeye:It's been it's a very effective methodology, and we're currently implementing that in Nigeria right now.
Samara Barnes:I absolutely love that Toyosi.
Samara Barnes:I think a lot of the time when we talk about research, we forget that there's people at the bottom of this research, and really bringing it back to the individual is
Samara Barnes:I didn't know that there was such a thing as photo voice, but when I was poorly, I recorded quite a lot of my journey by taking photos, because I didn't really know what else to do.
Samara Barnes:I was trapped in my house a lot.
Samara Barnes:Um, so I took photos of the tablets that I was taking, when I got all sorts of funny rashes from allergies from the tablets.
Samara Barnes:I recorded pictures of me cuddling the dog because I was on my own.
Samara Barnes:So I think actually, this is the power of Facebook.
Samara Barnes:It comes up every year, so I can remember those times and I can share those times with other people as well so I think it's extremely powerful.
Kim Ozano:Did you share those photographs as you were taking them with family and friends, or was that something that you preferred to have yourself?
Samara Barnes:I didn't at first because I didn't know whether people would be interested but actually, I thought that it was a good way to, to let people in and see what it was really like.
Samara Barnes:Interestingly from sharing those, I've met other people who haven't lived too far away from me, that have had TB since, and they knew to contact me because might have had a
Samara Barnes:Those photos has done a lot of good in connecting people and helping people understand the illness.
Kim Ozano:I think it's great to hear and we're always looking for creative ways of engaging people with lived experience so that we can
Kim Ozano:So it's good to hear that you also enjoyed taking those photographs and it gave you a new mechanism to communicate.
Kim Ozano:Jasper, in terms of connecting with communities in Uganda, what kind of methods are you using?
Jasper Nidoi:I'm using two methods.
Jasper Nidoi:One is, some health facilities in Uganda have male champions.
Jasper Nidoi:What we did in these sessions is that, one set of participants developed the ideal healthcare pathway, and what should actually happen in the healthcare facility.
Jasper Nidoi:And then the other set, um, developed the actual pathway.
Jasper Nidoi:And from this we got to see the hurdles because the group that developed the actual pathway did have the TB champions, so they got to tell us the challenges that they
Jasper Nidoi:We got to use this to develop, uh, barriers and challenges that they faced, you know, um, as they were seeking care and in their diagnosis and up till the time they initiated treatment.
Jasper Nidoi:The second method that we used, is called stepping stones.
Jasper Nidoi:So we imagined a river, and this river is filled with all these barriers and challenges that, that this patient had to overcome, and we had stepping stones
Jasper Nidoi:So each stepping stone was a solution.
Jasper Nidoi:Using this visual method, we're able to co-create solutions tailored to their barriers and challenges within this particular context in which we are working in and very
Kim Ozano:Fantastic.
Kim Ozano:Well, it's been a wonderful conversation.
Kim Ozano:We always like to ask both our guests and our co-hosts one piece of advice that they think other people working in this area should take on board.
Kim Ozano:So let's start with Toyosi.
Toyosi Adekeye:I think, uh, the advice I have for both the researchers, advocates, and anybody working in this space is for us to learn a lot more about tuberculosis.
Toyosi Adekeye:I know today Samara has said she learned a few things and from her speaking I've also learned a lot.
Toyosi Adekeye:So I think it's important for us to, to learn more about it.
Toyosi Adekeye:We already care about it.
Toyosi Adekeye:I think it's important for us to keep doing what we're doing and be as persistent as possible, and definitely we will be able to overcome this.
Jasper Nidoi:This advice is really tailored to maybe a question that I came across a lot when I started looking at gender approaches for TB.
Jasper Nidoi:The question was, why men?
Jasper Nidoi:You know, and the solution is that we really need to engage men so that we can have healthier families and so that we can have healthier communities.
Jasper Nidoi:So let's engage men, let's involve them, and let's make the TB care services that we have accessible to them.
Kim Ozano:Samara, from an advocate's point of view, what would you recommend for researchers and then also for advocates?
Samara Barnes:I think there's a couple of things actually.
Samara Barnes:I think it's really important to carry on having open conversations.
Samara Barnes:I'd encourage people to be really curious and to just keep asking those the difficult questions as well.
Samara Barnes:I think being inventive with the research methodology is, is something that I've taken from this.
Samara Barnes:I think the main thing for me is remembering that there are real people at the heart of this.
Samara Barnes:We are not talking about numbers, we're talking about mum's, dad's, grandparents.
Samara Barnes:I think that's key.
Kim Ozano:I will echo that.
Kim Ozano:Thank you to our guests.
Kim Ozano:It's been a great conversation.
Kim Ozano:Thank you Samara, for being a co-host and thank you to our listeners as always.
Kim Ozano:Please do like rate, share and subscribe.
