Talking out the stigma: The power of language in mental healthcare
hi everyone thanks for joining um let’s just wait a few more minutes for everyone to uh to join us okay i think we can get started and then we’ll uh have people um join us as they as they come in so first of all thank you so much for joining us for this webinar today uh we are really happy to see that someone you want to come here about mental health in malawi so we are really happy to have dr sandra jumbo with us from queen mary and also a special welcome to chris newby who is a senior medical statistician at the university of nottingham and he has collaborated with sandra on this on this study and he will be chairing the event today um so me my name is flynn and i’m the communications manager at lidc um so i will just uh welcome you and tell you about the the chat box and the q a box so if you have any questions you can put them in the q a and then we’ll get to them after sandra’s presentation um she will be answering questions then towards the end of the event and in the chat box you can also put um comments or general queries these kinds of things um so without further ado i think i will hand over to to chris thank you chris thank you and so i’m chris i’m a statistician at the university of nottingham with an interest in respiratory and mental health and i currently work on the nihr funded neon narrative experience online mental health trial within the recovery research team but i also carry out physical analysis on translated versions of english mental health questionnaires and that’s what i’ve been doing with sandra on with her work so doing a lot of the factor analysis and so i also work for the rds and the nihr research design service and so sandra also works for the research design service and we’ve collaborated for quite a few years now and she is a health psychologist by trade and she has an interest in health research and behavior change solutions she’s also worked in process evaluations of complex intervention trials and but our current research interests include developing complex interventions for non-communicable diseases and understanding mental health in sub-saharan africa so i’ll leave her to start her presentation thank you chris for that introduction and thank you everyone for joining today can everyone is that looking fine chris yep great okay great so um yeah thank you uh for joining today my name is sandra and as chris said i do research um with queen mary as well as a few collaborators in malawi so we have millennium university we’re based in plantai the national youth council of malawi and an ngo called drug fight malawi who implement community-based prevention programs for substance abuse and misuse um so today i’m just going to be sharing um reflections experience of one of the projects i’ve been working on which is looking at improving mental health literacy amongst young people in malawi so to start with just an agenda an overview just going to give background about the research why we’re doing it and then i’m going to be sharing findings from the qualitative study and survey that we have conducted in malawi and then i’m going to end with some reflections on what that means particularly focusing on the use of language in the space of mental health from a malawi context yeah so just starting with a bit of background uh why this topic why this area um so research at the moment shows that depression and anxiety are very common mental health conditions that affect young people across the across the world across the globe um so we will find that when we look at places which are low resources particularly africa at the moment addressing this issue of depression in young people has become a healthcare policy need it’s become a priority people are talking a lot about it but when we look closely more closely on the ground you’re finding that um mental health literacy in africa generally is still quite low stigma within the society is still high and the resources that are needed to be put in place to address the issue of depression and also other mental health needs still quite limited and this is no different to to malawi which is the southeastern region of africa so i’ve just pulled together some information from the world health organization mental health atlas resource just to give you an idea of how how limited the resources are for mental health and also substance use disorders in the country so when we think about malawi which has a population of just under 20 billion people the whole country there are only three mental hospitals or let’s say uh units within a general hospital and they’re all based in the urban areas so if you think of people who live in rural areas are particularly neglected and when you think about things like outpatient facilities there isn’t much data around there and it’s just because of the working that i do and people i talk to a lot in the country there is an organization called saint john that now started providing providing outpatient psychosocial services for people and they’re based again still in the city so uh the capital city and in the north in zoos but there isn’t really again much data on that in terms of treatment programs for young people looks like officially there isn’t anything there and also looking at data epidemiological data to help us understand what is going on in the space of mental health and substance use there is not no data available so you can see how sparse that is in that context and then when we think about the mental health workforce is predominantly um mental health nurses that are available in the country but still there aren’t a lot they’re 1.5 one nurse let’s say one or two nurses per 100 000 people in the country which is really really not much at all and then when we think about psychiatrists i know that for a long time we’ve only had three or four psychiatrists in the whole country um and we tend to have also visiting psychiatrists that come across this escorted there’s a scottish malawi scheme where people come from the uk to go there and work with the college of medicine or in hospitals for a few months and then they leave again when we talk about psychologists i think there’s still only three in the country i’m one of them and i’m i’m not there i’m here so the situation is really dire when you think about resources and health people in malawi thinking about mental health for young people in the country so again when you look at research evidence it’s very limited but there are indications of high prevalence particularly for depression up to 20 to 30 so amongst young people um there is also finding research shows that when people in malawi think about what causes mental health a mental health disorder a problem people tend to link it to issues around spiritual possession witchcraft substance abuse or alcohol drug use and you can imagine having those links results in people feeling very stigmatized being stigmatized being treated not so great and also a lot of discrimination not just for the person with the mental health condition but also their family and when we think about issues of substance use um again there are extremes in value so there’s a quite a substantial proportion of i would say they’re tea totals they don’t drink at all and then the people that the proportion that do drink seem to drink very heavily and have a very disordered relationship with drinking so binge drinking drinkages addictions and then more recently we are finding um and i think this has also coincided with uh the coronavirus pandemic but even before that it’s been a large an increase really in suicide cases in the country unfortunately seeming to be affecting again the younger populations especially young men in the rural areas i think though when you look at some media so newspaper outlets online printed i think you get a better picture of what is happening in terms of mental health in the country this issue of the presence of it and how it’s affecting people so you see things like this substance abuse on the rise the issue of people on the ground struggling to address drug abuse amongst young people the cases of suicide going up and that is affecting young people and then more recently we’re finding that people are starting to link this a bit more with maybe there is something to do with mental health here that we are not addressing and how can we address it people are starting to talk more but it’s still not enough so this is what brought us to the project that i am leading in malawi at the moment which is looking to increase capacity for mental health literacy and the hope is that if people are more knowledgeable about what mental health is if people know how to identify it for themselves but also how to identify symptoms or risk factors around their friends family in the community they’re more empowered to do something about it empowered to help seek power to try and manage this situation so in our project we’re proposing to do this by targeting educational settings particularly universities so the aim was to develop a prevention program for universities and we were going to do this by first of all going out and talking to young people to find out what are the issues that they face in day-to-day life that might cause mental health stress and also what are their thoughts and views about just generally mental health and then that would follow on with the survey and the hope was that we would use the seed funding that we got from phase one and phase two to develop a culturally relevant prevention program that can be delivered in university settings and this work would not at all been possible without the stakeholders that i mentioned at the beginning but also other people involved so the university my academic partner millennium the youth council of malawi drug fighter malawi and and so on and so forth so it’s really been a long a long term collaborative process of just talking and trying to tease out what’s going on and what can we do about it so i’m going to start by sharing findings and talking a bit more about the qualitative work so when we got the funding um unfortunately it coincided with the coven pandemic so i was mentally for malawi uh in april 2020 um so we were waiting for ethics approval and all the setup and all that stuff and then obviously in march the united kingdom went into knockdown at the same time malawi allowing closeness borders um so they won’t buy people in if you weren’t resident um but also the schools closed so that just uh affected where we were actually the setting we’re actually going to do this project in it couldn’t recruit they couldn’t really go into spaces because uh young people taught to go home so um i kind of pondered and thought what do we do how do i reach the young people i want to talk to for this project to start with and so i thought social media there are a lot of reasons why i think a lot of people quite a few people contacted me online about doing talks around mentor and that i think does then organically gave me the idea to see if i can get people through social media so i i sent a tweet out telling people we’ve got this project if you’re interested if you’re a student any of these universities get in touch and then mary rose from the youth council working with did the same so they posted on their website their social media pages and millennium university did the same and this proved to be a really effective way of recruiting because so looking at the timeline there just shows a timeline from that post to recruiting to doing the actual analysis of the study so i posted in january end of january and within a week i got 50 responses from the tweet that i sent and then um from the youth council we got a drug fight now we got about an additional 40 more responses and in the end we were able to conduct 10 focus groups over a zoo with a wide range of young people university students graduates youth leaders and the focus groups are great i learned a lot people said a lot i just i didn’t have to really push for any i’ll just throw in a question and people would just talk and debate and share and it was a great experience um so we’ve analyzed that data and we’ve submitted it for publication plus one at the moment so hopefully that will be published soon but we also used a lot of what they said in those focus groups to help us to adapt the mental health literacy content that we were going to develop as part of the prevention program so that was really fruitful work in the end and also we were able to grow our stakeholder network so we had a presence from the young feminist network it’s a great group of young women some are still at university some are graduates who do a lot of advocacy work around gender equality um we had presence from muneco and a few other organizations so it’s just again a thanks to those people for taking the time and having such an interest and passion in the space of mental health for their country this is a summary of what people said as i said at the beginning they said a lot um but so this is just a snapshot of the issues that were raised within the focus groups so young people talked a lot about social economic and health challenges that they face as young people in malawi a lot to do about high like unemployment limited backing opportunities difficulty staying in school because of fees and that uncertainty a lot around energy poverty by that i mean high price of internet utility bills and that kind of impacting on their ability to um have more access to online materials for learning uh which was obviously a big thing during coving right um and then also this surge of pregnancies during the pandemic because uh young people had nothing to do they were just told to stay at home so there’s a lot of loitering i guess that links to unprotected sex and then thinking about how are those people especially young women young girls are they going to be able to go back into education what is the impact on their future as a result of that these challenges fed into mental health causing mental health distress but also people talked about existing mental health and substance use problems so depression anxieties there’s lost social anxieties that were unrecognized by people’s friends or family particularly parents the issue of suicide came up so one or two focus groups some students disclose how they found someone on campus had taken their life and how they received no support at all no no counselling from the school from the university as a result of that um and then also people talked a lot about what it what it meant for them the fear that it brought that it would it that their parents might not survive it and that would remove their support structure um what would happen if they got it um and the impact on school and their education and life and will life always be like this how do we recover from that and how people lost their jobs because of it and all these issues that people disclosed fed into increasing mental health distress but then there was a recognition that there was really no support to help address those issues a lot of that was to do with limited access to services and also not having enough mental health practitioners but also generally people felt that the low mental health literacy and stigma in the country meant that it was really hard to come forward when you were suffering and you were just kind of seen as someone who is perhaps attention seeking and again that led a lot people talked a lot about relationship issues with family particularly parents and that was a detached generational gap um they felt like they knew a bit more about mental health but when it came to the parents they didn’t have that a good enough understanding to take them seriously or to be able to support them in the way that they needed to be supported and also there was a lot of pressure to look a certain way within the society behave a certain way i have specific achievements around getting a good job after graduating around marriage around relationships and what that looks like and overall as well they just felt that the government or those in leadership were really detached from what the young people allowed need and therefore they didn’t really provide anything for young people to do on a lot of levels i’ve just taken a snapshot from those many conversations that summary and focused on the i thought i’d share some quotes that to me were very poignant and that were more focused about around mental health communication the challenge of talking about mental health in malawi and how do you go about describing how you feel where do you go if you’re feeling a certain way um so i’ll just leave you for 30 seconds or a few seconds just read those quotes and absorb them for yourselves so um yeah reflecting back on what people said i guess these were a few of the lessons that i came away with after that qualitative work i think that it was very clear that there were limited spaces for young people to go to when they needed to seek help there were no safe spaces as such to talk about mental health although i think social media has become a great outlet for young people particularly to at least talk about mental health i’m seeing that more um now there’s a lack of words to properly describe how you’re feeling when it came in the context of mental health in the local language particularly and therefore um there’s this push from people to say don’t just target us in educational settings it’s really a need for you to go a lot wider and think about how people feel or talk about mental health in a broader community setting so this feeds into the uh mental health literacy survey so after the qualitative study we uh went out and uh you know to do a survey across the country to get an idea of what is the base level of mental health knowledge um across the country amongst young people so typically between the ages of 16 and 13. um and because of what people said about a wider reach we had a discussion so myself colleagues at millennium university national youth council and drug trade mahari and those two organizations that were really really passionate about particular about this thing that we really need to when we say rural really need to go out into those rural communities and get those young people that are not typically the ones that would already be passionate or uh probably more knowledgeable about the space of mental health because i think because the focus groups were done online and they probably attracted a particular type of young person um likely more affluent uh more educated you know they were studying university or graduates so we wanted really to get quite a broad perspective so um because of that we decided to translate the survey questions into the local language to give people the option whether to complete english um because we had a problem sound assumed most people in rural areas would be completely detailed so we started off i’m just going to talk through the process of translation so i translated the original english survey into chichewa because i speak both languages and then i had two colleagues um from the union university who back translated so they took the righteous version that i translated and translated back into english and then we had a chat and talked together discussing through things that were lost in translation through that process maybe terms that didn’t really make that much sense um when we linked it back to the original english and then we did some pre-testing of the items um so with that i sent uh i shared the survey that was surveyed about seven people to not just complete it but also to comment on items that didn’t quite make sense and this was a very interesting process um because people said this is i don’t think this is quite the right term but then when you ask them what do you think is the right term they also weren’t sure so again i used the power of social media and i reached out to the facebook groups that i i’m in touch with we do a lot of mental health work together and also just some community groups as well and then kind of adjusted survey and then we decided to administer it in four rural districts to start with to see if uh how that went how that would go then after that um we did some uh chris uh actually helped with doing some psychometric analyses where we were basically trying to look at does it mirror the uh factors that were that came up from the original so there were four factors looking at knowledge mental health stereotypes beliefs help seeking and then self-help strategies we were trying to see if vaguely you’re answering those questions the same way and it kind of looked like it was there were a few interesting uh uh items that were a bit odd in response but generally i think it was okay so we rolled it out to the other districts the next um slide is just sharing um the process of that pre-testing that translation making sense making of those items so the terms that we really um were struggling with because people all have slightly different translations of them mental health depression [Music] delusions so this is a post i sent out one of a women’s group malawi group online on facebook and some people came back with some translations so this person actually works as a mental health professional in malawi so she said these are the things the types of descriptions you use and also what people tend to use patients clients when they are in the clinic so um yeah and then someone just also had a goal themselves but actually i wanted to share more these comments where actually what people are saying is it’s just actually really hard to translate these words if they’re out of context um and yeah and then just some interest people saying actually this is really useful work is needed but yeah it’s just difficult i think is what we learned from there so this is an overview of the areas where we conducted a survey so as you can see we’ve kind of covered from north to south of the country and also we’ve done a nice mix of urban areas as well as quite rural areas make sure that kind of thing there’s just some pictures of so this is nelson and his team from drug fight malawi and people who went out the field workers to help with completion of the survey on the ground um and this is a group in qatar basis happy who helped us with collecting survey up in the north that’s mary rose from youth council and she did a lot of the surveying in the central and kind of lakeshore south areas and this uh is in uh i want to say salima and this is a predominantly muslim part of the country although majority of malawi would say that christian religion wise um yeah so we and this is again uh in zuzu which is an urban setting um so yeah we try to cover quite a broad uh spectrum so this is an uh a summary of our sample so the average age as we expected was 21. and we got a lot of people between the age of 16 and 25 which is great um in terms of education as expected a lot of people had completed primary and secondary school but not many had progressed beyond that um in terms of occupation again as expected most of them were students 45 percent but there was a high level of unemployment actually that noted and i guess it’s a parallel it kind of fits with what people were saying qualitative study and as expected again just a snapshot of the people that we got so again i’m going to focus back on language use of language um and how that translates to addressing mental health problems so in the survey one of the questions was do you know anyone with a mental health problem and just under half of the people completed the survey said yes they do and there’s a sub question to that we asked what is your relationship with that person um so it was kind of interesting that more than half definitely more than half of the people knew someone who was close to them so either a relative or a friend who had a mental health problem um so this is a summary of uh the next question is what type of mental health or what mental health problem does that person have so this is a word cloud of the people who completed the questionnaire in english so a common uh mental problem was depression but the biggest thing that people said was madness and i’ve said this because there’ll be i’ll explain this later when i share the chichewa responses but yeah so depression uh ptsd stress um brain disorders was an incline indication of something wrong with the brain so those are more common responses we’ve also had things around substance use smoking particularly cannabis or um uh heavy drinking let me have some unusual responses um the first ones is leprosy i was really confused to thought hmm that’s that’s more of a skin disorder nothing to do with mental health but then when unfortunately one of the responders translated it gave the chichiwa translation for what they meant by leprosy that’s when i discovered that what they meant was epilepsy not leprosy so that shows a kind of a confusion of what exactly certain conditions are and so yeah a lot about a few responses about epilepsy and then people talked about others where they just that person just seems very confused um uh i guess delusions hallucinations they don’t think well and some indication of suicidal thoughts there some fears around that um some people mentioned disability which again is peculiar so that linking disability to mental health for some people and then um another interesting thing was people uh talked about violence uh antisocial behavior so being angry as a mental health problem so those are the english respondents now this is what the teacher response responders said and sorry i’ve put it into a because it’s just a way of helping me remember what people actually said so this will be a bit of a lesson of an english translation i guess so misala was a big thing and misawa is translated is madness so actually that word misawa is a really common term if you ask most people maui what is a mental problem they will say to you nisa but actually the the translation for messiah is actually mad colloquially but also in terms of formal mental health care if you say someone has masala as is has an illness of misala it’s actually psychosis um so i’ve put a list of other translations there just okay so again depression was a big thing or this issue of um the brain not really working well like having issues understanding um things anxieties came up again epilepsy a lot of people mentioned memory problems which didn’t come up with the english responders and also again substances like that so there are a lot of overlaps um with madness this concept of being mad uh but then they also so this was about fifty percent of the response but the other um fifty percent came back with words like this and again it’s integers are best just to trigger me to explain so the biggest thing that people describe as a mental health problem so is um like someone who’s violent so hitting or fighting with people randomly um stealing um yeah so these aren’t mental health problems these are anti-social behaviors as criminal activity but being angry um but they are linking that and saying this is the mental health problem um so we see that societal stigma and why people might hesitate from coming forward to say i think i’m struggling mentally because you don’t want to be linked to someone who is violent and hitting people and stealing and conducting criminal and social behavior so that linking of mental health with violence is something that needs to be addressed um there are other things that they said like um wandering around endlessly so that’s the top one there um talking being too talkative or not making sense when they talk um again could be indicative someone may be going suffering very much have maybe going through psychosis delusions so those are i guess actions behaviors that could indicate a mental problem but they don’t actually know what the mental health problem is and other things like migraines so those are very interesting that with the tutorial responders some were able to pick or identify an actual mental problem like depression um anxiety but quite a lot of them were just talking about ways of behaving acting that they think are a mental problem then we have some more obscure responses so one person said the person that i know has a with who has a mental health problem suffers from malaria that’s the translation um malaria mental health um i i kind of thought were they trying to talk about the fever or the hallucinations that you get when you suffer very when your malaria is quite um you get quite badly stricken by malaria and that is what they were linking to mental health problems other people talked about poverty-related issues so they lack fees i assume school fees or they go around begging and others talked about relationship problems but in themselves again these things are not a mental health problem so i i found it really interesting how people were linking um these things to a mentor actually being a mental health problem so i will stop there and just conclude so what reflections and lessons i think a lot um i think i have summarized to these four things i think firstly is that what i’ve learned from this project is that beyond lacking service provision and the stigma existing stigma in the society in malawi communication it adds another layer of um or another challenge to actually providing effective mental health support for people particularly young people and that um the common mental health terms that we use in the space clinically are very are typically very western concepts so actually i think we need to think about how do we develop a local way of talking or describing or defining these terms in the different settings that we’re working so that is clearer what we mean and also to avoid things being lost in translation for example the translational code is to feel low but how do we differentiate whether that low mood this clinical depression versus just feeling low um and then lastly i think there are there are definitely what i’m finding now is it the cultural uh nuances indications of health and well-being that still impact on understanding of mental health and what i mean uh what i mean what i’m trying to say about is this i’ll give missalas the typical example um again it’s a nuance it’s as i said the translation for me starts madness um but is it when people say you’re mad people can use it in general terms is joking me and say you’re mad or whatever but actually when it comes to clinical sense people don’t want to be associated with with that word because of the stigma that comes around it so if people say that person is mad the images that typically come in the head of a malaria especially me growing up in malawi’s a person who is walking around the street aimlessly no self-care neglected they don’t care for themselves they can be violent they can hurt you there’s a fear there’s a there’s almost dehumanizing of the person so if we use that way what impact does it have on people people want to be associated with that word and then what is the impact on people and trying to seek help for that and then also i think is this thinking of extremes that you are either okay or you are either mad i think people don’t really understand that mental health is on a continuum the same way as physical health like today i could have a cough next week i might be absent of that cough and be in good physical health whereas you know when you have a coffee poor physical health in the same way i think people need to understand more that with mental health one day you can have you can be suffering mentally and be distressed and the other day you can be feeling great that it’s not a one other it’s only a continuum um yeah but i’ll stop there and i’ll just leave you with that quote and that’s from the paper from talking about suicide in malawi i just thought that quote was really it just explains it all i think as a country we need to prioritize mental health the issues that exist understanding the concept because without without that there is really there is no help um thank you for listening sorry i went on a bit um and yes more thank you to all the people who actually completed the survey and took part in the qualitative study thank you sandra that was really good really enjoyed it and so i think we have some questions now uh yes so i see there is one question in the q a box and also if you have a question you’d like to to ask yourself you can also raise your hand and we’ll unmute you okay so we have them a question in the question and answer box and it’s an anonymous attendee and they’re asking em did you find that the demographics of youth recruited through social media were different to who you would normally get in touch in pre-pandemic times and if so in which way uh yeah great question um um i want to say definitely i think yes is is the answer to that i kind of said a bit about this before and i think also how that influenced the change in recruitment strategy for the survey i do think that we’ve got a particular group that are already passionate about mental health mental health issues or uh quite a few of them actually work uh in the space so they’re social workers for example or uh mental health nurses so yeah definitely we’ve got a different type in that way um i don’t think there were different pre-post pandemic no i don’t think so but i think in terms of their interests we probably got a group of people who are already consciously on or unconsciously advocating or advocators or of mental health in a way okay okay we have another question from esther and she says how did the views about mental health differ between the participants recruited via social media as opposed to the digitally excluded group yeah i guess we didn’t really get a chance to and everyone we um we did the focus groups with was um was from social media i guess we had one or two um who came through drug fight malawi and i think those tended to be practitioners so people young people working in that space so maybe that was the difference um their views um i don’t think their views within the focus group definitely i think people had similar views all across the board i think one contentious issue was um maybe gender gender differences there were a few gender related issues but um yeah aside from that i think yeah okay um we have another anonymous um question what do you think is the cause behind the stigma surrounding mental health issues in malawi i’m not i don’t want to say well since this is my view it’s not an expert view i’ll make that disclaimer um so from my experience i think it is that um thing that you are either when you have a mental health uh problem that’s it that that’s you that there’s no there’s this perception that perhaps is not cured or also that your family could be cursed um because of that linking to witchcraft or potential spirit possession or that you’ve been cursed and that kind of thing so um it then becomes a thing about your family so people would rather just care for the person at home and trying to hide it and hide it until the person has been treated and it’s gone um so i think though that’s the main cause behind the stigma the myths around what causes mental health but also this thinking that that’s there’s no cure for it you’re you’re just you’re a mad person and therefore you can’t be a functioning citizen basically so those two um issues okay so um i have a question from hannah and um it said she says thank you for your presentation um were there any challenges with discussing mental health in malawi while navigating religious beliefs uh oh so i think one actually this was a an interesting topic and a point of debate so some people believe that [Music] faith-led organizations could be a good way to get people to talk more about mental health and then also as a point for seeking support um so that was one one uh argument of thinking and then the other thought was actually the opposite where some young people i think it’s just particularly university students felt that religion should be kept out of therapy because sometimes and one person shared a personal experience that if you put everything to like religion like pray about it and god will help you and you pray about it and it doesn’t work you’re still depressed you feel like god doesn’t love you and so it can actually drive you away from your from your religion or your religious beliefs or your faith so they felt that actually should be professional that was one of the barriers they felt for accessing the counseling service where they were because they said it was very faith-led and um the counselors are quick to say you know here’s a bible verse meditate on this and you’ll feel better or you know they yeah so there were those two thoughts that came up in terms of religious beliefs um [Music] yeah great um uh i’ve got a question from victoria and she asked them would it be useful to ask about experience of specific symptoms such as fatigue and low mood and even though mental health is understood differently does it still have the same effects yeah so that’s a really good question yeah it’s good yeah i kind of agree with that that might be a yeah a different approach to teasing out more yeah thank you for that victoria and and for one from ivana and and she says uh what lessons from your research can we bring to mental health considerations in the uk uh quite a few actually so um so in my own with the research design service i’m also well both chris and i actually we are also part of the equality diversity and inclusion working now and that this has been getting making me think a lot about how people from minority groups uh access mental health services here particularly people are not maybe english is not their first language um [Music] and i think it i think there are a lot of things that can translate to here um whether being more conscious about whether the terms we use as professionals of the training we receive here whether that translates to every patient we see or maybe we need to be more conscious about who someone is and culturally ethnically where they’re coming from and what those terms mean to them and also the issue of stigma because just because you live here you’ve moved here it doesn’t leave behind those notions of those stigmatizing or stereotypical beliefs that you that exist in your community so i think in the same way i think that the issue we found in malawi is kind of relevant here i don’t know if that answers the question i think i think it does i think what’s striking about your research is that you’ve concentrated on some of the rural areas which are difficult uh and well more more difficult to reach because of infrastructure kind of um things and and a lot of the research in the uk is around universities and hospitals which are usually urban aren’t they that’s really good and we have another question and what do you think is the best way to start creating a local mental health lexicon do you think it should be health workers or community driven i think we need both i think we need interaction between both parties so that we kind of meet in the middle um i think that would be i don’t know what you think chris um i think yeah it’s a communication isn’t it i think both are needed definitely but i think um sometimes there might be kind of words from the community that don’t really have a good translation back in english i didn’t know whether there were any but you found that were like that did you find any mental health words that um that were difficult to translate back into english i think um yeah even and even depression i think still is quite this is a low mood is it very low mood is it um some people prefer to say you know someone stuck in darkness that was the literal translation but because it’s not just low mood um yeah but i think there are other things and not just mental health so the word behavior um i don’t know if um mary rose and joel are on online still but um yeah so that how to translate behavior in the way that we conceptualize it in in english in psychology actually that was very difficult like an action or is it a way of being versus a thought process it was yeah that was they were complex yeah just a word you think is straightforward but actually translating it it has to be put into the context um yeah and what comparison in literacy was there between those in rural areas and those in urban areas uh we haven’t uh looked at that yet i don’t yeah i feel like i can’t comment on this thing because we haven’t um it’s still preliminary analysis isn’t it um okay and we’ll move on to um uh someone saying this is a fascinating discussion and what do you think the next step should be for mental health in malawi um [Music] there’s just so much scope for a lot to be done but i’ll share what we’re thinking of what we are planning to do next um so we’ve already started a bit of inter cultural work so what we’re trying to do is use um cross-cultural we’re trying to use um uh creative approaches to research to so we’ve got a group of students from queen mary university working with students um at millennium university so they’re studying social work public health graphic design and the aim is to kind of create a space where they share their experiences mental health they either like review an article and mentor and talk about what they think about it from the different perspectives culturally whatever and then the overall aim is for them to create artwork um animations uh photos but also resources that can then be shared to other young people about people’s experiences of mental health how we portray it in different contexts different settings as a way to just get young people to talk more about it and to share another thing is we’re trying to build a website of resources not just talking about knowledge stuff or breaking stereotypes but also signposting young people in malawi to free vetted youth friendly support so that’s why it’s really important the networking the public engagement parts building a network of people working this space to so that they can be signed people can be signposted to them um so that they can access free um support but there is there’s so much so it can’t be done that might link him with the next question of um from and it says a great project which glitty shows a need and then she’s wondering if you have a picture of what the intervention would look like based on your findings and she says it’s still early days so it’s okay for you to um at the moment the intervention that we’re hoping to uh pilot in the feasibility type studies um so we’ve done we’ve created an e-curriculum and mental health literacy type curriculum which uh can be accessed online so the hope is that we’re going to try and deliver it in universities in malawi so that all first-year students when they come in as part of their first year they go through that module hopefully it’ll be like a one two week type thing um and we will assess uh impact on like mental well-being performance being exposed but also just get feedback from them about how they felt uh going through that module whether it’s useful to them or not so that’s what we’re trying to do my hope is that actually normalizing mental health in the curriculum would hopefully again be a way of getting people to think more about it if not more like talk more about it and then it’s more conscious on the mind so that’s that’s the plans that’s with the intervention great um we’ve got a question from catherine uh do you think the same intensity of stigma is applied to masala as to someone with their anti-social or eccentric behaviors described talking too much etc or are these accepted within a more holistic view of people’s mental health and behavior i’m not sure i get the question um what do you think i think um the question is around is this um a stigma applied to the word uh misala and as to someone with antisocial eccentric behaviors kind of um okay so the degrees to which they are stigmatized i think yeah uh the term she also goes on to say about sorry go on um [Music] i don’t know you know i think i i do i do agree with the there are some behaviors more acceptable in men so um the thing of drinking heavily and smoking is kind of sometimes in some tribes in some culture some settings is seen as a rite of passage for a young man uh people said that in the focus groups but um i still think now if you’re a young woman or if you’re a woman and you smoke it’s it’s just really is a taboo it’s like why would you smoke and this is not even uh illicit drugs it’s tobacco smoking it’s like why would you smoke as well and i think to an extent drinking as well um so maybe those behaviors uh the one masala thing i think in terms of intensity of stigma yes i think it’s it’s more negatively viewed as opposed to someone saying oh you fight especially if they’re safe a man has those antisocial they’re just very angry or they fight and lash out a lot i think that’s again more acceptable it’s kind of and it’s just weird if you’re if people know as an angry woman right women are in malawi i don’t know if it’s changing but from my experience there’s a desirable you have to be quite unique and just tame and soft and even the your tone and how you speak you kind of reduce your volume and your gentle that kind of thing um so yeah there are those nuances but i’m not sure how they would fit into mental health let’s say but i think behavior-wise maybe those things do feed into how people view people’s mental health um actually i’ll be interested to know what catherine makes it’s a really interesting question and what her thoughts are yes so sorry to to interrupt there oh sorry um i think we’ve run out of time we’ve had so many great questions after really a fabulous presentation uh so um from lidc site i’d like to thank dr sander jumbo from coming today and also uh dr christopher newby for for hosting the event today um i don’t know if there are any any last uh last uh sort of reflections you’d like to share with with the audience um today um no not really i i actually wanted to bring in mary rose at some point to talk about the the service but i don’t know if she wants to i don’t want to put her on the spot but for myself i feel like i’ve talked a lot so maybe i should just not say anymore and just thank everyone for your amazing questions and also just being so interested in this topic from my side and it was really interesting and a few people have said around sharing the slides and the recording is that possible hey yes so and recording i will post on the website i’ll send an email to everyone who signed up for the for the webinar once it’s online and if sandra wants to share her presentation i’d be happy to also upload that on our website or put it in the email or um whatever you prefer so i think um yeah just uh finally for me uh we have another event in one week um at action against stunting hub if you’re interested please do join us um you can find more information about this on our twitter feed uh and apart from that thank you so much for joining us today um all the the whole audience and also of course sandra and chris uh it’s been super interesting to hear about the research and to learn more about mental health in malawi so uh thank you for that thank you for having us okay all right have a nice weekend when that time comes
How do you speak about something for which there are no words? Dr Sandra Jumbe of Queen Mary University of London (QMUL) has researched youth mental health literacy in Malawi. She soon realised that the problem in Malawi is not only connected to a lack of communication about mental health, but also to a lack of words to properly describe a mental health condition in the official local language – Chichewa. The depth of this problem was especially visible during translation, as Dr Jumbe was struggling to describe depression in Chichewa for a mental health survey needed for her project. This only emphasized the power of language in mental healthcare.
Depression and anxiety are now the most common mental health conditions that afflict young people worldwide, but there are still contexts where mental health issues are downgraded or misunderstood. In sub-Saharan Africa, addressing depression in young people is a healthcare policy need. Mental health literacy is low, stigma is high, and the ability to address needs at the community level is limited. These challenges are significant barriers to accessing mental healthcare for depression, a leading contributor to the global burden of disease.
By engaging people to communicate better, discuss and share their mental health symptoms and experiences, Dr Jumbe aims to break down stereotypes, improve relationships and aid recovery. In her opinion, it is only when people start talking and creating words to help describe and understand mental health that stigma towards conditions like depression and anxiety can be tackled in Malawi.
In this seminar, Dr Sandra Jumbe will elaborate on her experience, observations and challenges of researching and working on youth mental health literacy in Malawi.