Very much, everybody.
I'm delighted to welcome Trish Greenhouse, professor of Primary Care, Health Sciences and the Department of Primary Care Health Sciences at Oxford.
We, Trish, joined our team sort of this year and we're absolutely delighted to have her expertise.
Trish studied medicine, medical, social and political sciences at Cambridge and Clinical Medicine at Oxford before training as an academic GP.
And so she's one of those people who can marry the social sciences as a trained social scientist with the medical studies.
And she's going to be talking tonight about theorising with narrative about storytelling,
how careful analysis of stories can help us rise above the ontological disorder behaviour change research possibility.
Right. Thank you very much. So my name's Trish Greenhouse.
Going to talk about theorising with narrative.
And when I was waiting to give this lecture, three of you came up to me and said, It's a bit of a scary title, isn't it?
And one person said this word ontological added to words like epistemological and triangulation.
It's things I've got to put into Google and learn about. So I wouldn't worry too much about the word ontological.
What it means is what's going on. You know what's going on here, what is the nature of reality?
And add that to epistemology, which is how do we know what's going on?
So what I mean by the Ontological Desert is a lot of behaviour change research doesn't really go very deep,
it doesn't isn't very rich about what's going on.
You know, the very nature of behaviourism is all about stimulus and response and all that kind of thing.
And the trouble is in certain areas when you've got very complex social determinants of health,
socio cultural influences, behaviour, change, your research just doesn't get you very far.
That's, that's my personal view. Before I say anything more, I want to acknowledge funding from,
particularly from the European Framework seven program actually, and also from the National Institute for Health Research.
You very kindly give me some money for being a senior investigator,
but also the many members of the team that I've been working with on something called the gift study, and I've got a list of them later.
Okay then. So this is about storytelling.
Four days into a five day qualitative research course, we all know that a narrative is a story, but what's the story?
Oh, a collection of reflections on something someone's been through.
So the idea that a story is told retrospectively and it's about events that unfolded, great start.
What else in stories usually has a beginning and sometimes often end.
Brian Jones is fond of saying that story is something with a beginning, a middle and an end.
And actually the muddle is quite important, isn't it? I mean, you know, it doesn't have to be Harry Potter.
It could be anything. But this is what Aristotle called trouble.
Something happens to make it a story, because if you just kind of dum, da dum, da dum, everything just carries on.
It's not a story, really, that has become some some trouble in the middle of it.
And then it's how you got out of the trouble. What else about stories?
Yeah. Journey. Journey. Go on.
Tell us more. So. So it's events unfolding in an order?
Yes. Yes, it's sequential. It's events unfolding in an order quite like that.
Yeah. Okay. Well, I got down then.
Too much audience participation. I'll go off my script. Okay.
So Aristotle said there's five defining features of narrative.
The first is chronology, the unfolding over time.
The second is some kind of setting, you know, once upon a time, in the middle of a big world, whatever.
The stage on which the drama unfolds. Thirdly, characters.
People. Animals. Robots.
These days, androids who get in and out of trouble and then trouble.
A breach from the expected. And finally, plots.
You sort of got this when you were talking about, you know, the suggestions you made, the use of various literary devices,
the narrative scholars among you will be better than me at naming those to depict what I've called narrative causality.
Some such and such happened because of such and such, and it's a narrative causality, not a statistical causality.
And actually, those of you who come from quantitative backgrounds might have this found this aspect of qualitative research a bit.
Can you hang on a minute? What's correlating with what? Well, it's not about correlation, is it?
It's about a literary causality.
The example I sometimes use is, is the dursleys kept Harry Potter in a cupboard.
Why did they keep Harry in the cupboard? Because he was a wizard. And it's that word because I didn't like wizards, you know?
And you put these things together using these literary devices,
not just to depict what happened, but also to depict your characters as good or bad people.
So that was what Aristotle called plot. And he was really keen on plot.
You know, unless you've got a plot, you haven't got a story. Jerome Bruner, amazing guy, still alive, I understand, at the age of about 99.
Last time I was in touch them, he was still teaching at the age of about 96.
And Bruno worked right back with people like Jean Piaget.
You know, he worked in the early days of psychology and he wrote a number of books about narrative.
But you have to learn to take him from where he was.
He came you know, he did his Ph.D. in his post-doc work at the heyday of behaviourism, where everything was stimulus response.
That was what psychology was. And he said, no, no, no, no, psychology.
It's about meaning. And he wrote brilliant work on the narrative structure of experience.
Narrative is evidence, but it's not the same kind of evidence a statistical evidence narrative seeks to persuade.
However, not all evidence is narrative.
So if I give you an example of a narrative, you would say, well, that's that's just anecdote.
That's very atypical. On the other hand, some narratives, you you look at it and you say, well,
not only do I find that plausible, but it also resonates with my own experience of similar situations.
And what Bruno said was, there's two types of evidence is logical deductive evidence, logical deductive causality.
And this narrative of causality, this book Acts of meaning, is really very short.
You can buy it from Amazon for about £6, you know, in a Second-hand bookshop, and it'll take, you know, more than a day to read.
And it's really very, very well explained. Okay, let's go off and collect some stories.
Now I've got a biased sample, actually, all the people who feel strongly enough about qualitative research to pay a large amount of money to come on.
This course is collecting stories, research.
Who says yes? Okay, about a third of you.
And who says no one possesses? No.
And who says that's a stupid question? I don't know. Or I'm on the fence.
Yeah, a couple. Yeah, it depends. It depends. And that you're coercing.
It depends. Sure.
Few years ago, I got interested in this question, and I put together something called a Delphi panel, along with Thomson graph to ask this question.
Is it research? Is it good research?
And this piece of work began when we had each had applications to do research turned down by ethical committees, ethics committees.
And I got one study turned down by the Ethics Committee to say, what you're asking is not research.
You're not doing anything invasive, meaning you're not taking a blood sample or something like that.
And it's nothing. Not a lot that's more invasive than asking someone to tell their entire life story and a tape recorder.
But at the time, the ethics committees or some of the Ethics Committee was simply just turning this down, saying, this ain't science.
So that's what led us to this story. Do you know what Delphi panel is? I mean, look it up.
I spent a long time explaining.
I mean, basically get a panel of experts of different kinds, people who are scholars in the field, people who are actually doing the work.
And then you give them a number of statements or you ask them to help you generate statements,
and then they vote as to whether they agree with those statements. And then you revise the statements and send them around again.
You can do it by email and it's quite a good way of sort of reaching an expert consensus.
And this is what we came up with after about, you know, nine months of going back and forth around this this panel of experts.
What do you think of that? Happy with the definition of research.
You can see it's a bit bland because we're trying to sort of keep people happy.
We don't know. You know, all the extreme views were sort of filtered out by this Delphi process.
So so in order to decide whether storytelling and story gathering is research, you've got to define what research is.
So it's about contributing to new knowledge. Story. Yeah.
Okay. That was pretty much what you defined the story as.
Those of you who thought narrative collecting narratives was not research, was that because you thought the stories might not be true?
I think I was the only one. And I think it's because the story is just the start.
The story is just the story. So it's good.
The research depends on the researcher, not the story. The research depends on the researcher, not the story.
This is good. Come on. Okay.
But what do you mean when you say the research depends on the researcher?
Yeah, because the story is there. You.
The story is the. There's an object here.
Everyone has stories you can question about people, about started interviewing people.
But then if that's not analysed, that's not true.
Yeah, it's not a research. It's only the narrative.
So it's a story in and of itself is just a story.
Yeah, I agree with you. In order for that story to become research it, something else has to happen, is what you're saying.
Yeah, interesting. That's absolutely right. So I'm not going to go through this in enormous detail.
If you're interested, you can you can look up this paper is in medical education or I'll send it to you if you want.
What does narrative research consist of then? Just collecting any old story for any purpose is not research.
But let's just tighten it down. Story gathering.
Collecting stories that are already been told or written.
You know, getting onto the Internet and finding people's blogs and then saying, That's my dataset.
That could be research story eliciting.
That's the most common going along in asking a participant to tell a story.
And that's what they do, of course, with Health Talk Online.
Then this story interpreting, actually drawing meaning from the stories and story collecting,
collecting several stories and bringing them together and synthesising them.
Okay. If that is done with the explicit intention of furthering a body of knowledge, okay, that would count as research.
One of the people I've worked with once was the OC.
One of my courses was the ombudsman whose job it was to collect complaints and respond to complaints.
And yes, what he wanted to do was analyse the complaints letters and write research papers on it.
So you can't do that.
You know, it's not like they wrote it, they wrote the complaints, but they were they were narratives that were very powerful narratives.
But of course, to convert those into research, you'd have to write back to people saying, would you mind, etc., etc.
So firstly, any research has to be, you know, systematic.
You have to have a question, you have to think about your study design, your sample size, all that kind of thing.
And particularly this last year for this works good two days.
G The research is awareness of the possibility of error and the steps taken to minimise or take account of this.
So that applies for quantitative research, qualitative research, whatever, and it's really, really important.
Are you being reflexive about the possibility of error or distortion or perspective or bias or whatever, and what are you doing to minimise that?
There is also an issue in research and I think the example I'm going to give you will highlight this,
that either when you go out and collect a story or when you take an existing story and turn it into research material or seek to do that,
you take on ethical duties towards the storyteller.
And if have you have you had to look at the health talk videos yet?
Yes. So if you have if you haven't just put health talk into Google, you'll find lots and lots of videos of people talking about their illnesses.
I was at a conference in London yesterday and someone showed a very powerful video of a guy who was dying of cancer and all the rest of it.
Now, once you've heard that story, once you are collecting it,
and once you've got it in your dataset, you have duties towards the person who told it on a stage.
You're not going to just cherry pick quotes like the press do sometimes with the well,
then all of us ready to do no harm to make sure that really this is a person who's told you a story.
You know, if you're going to stick it on the Internet or published in the Journal, have you thought about the effect that will have on the person?
All sorts of issues around consent and confidentiality.
Of course, if the person is agreeing to have the video onto the Internet,
that's a different kind of confidentiality from, you know, if they would like to remain anonymous.
And so that's an ongoing negotiation. I'm sure you have you have talks on research ethics.
Yes. Yeah. Okay. Let me tell you about this gifts program, then.
So the principal investigator is not me. It's a diabetic allergist and geneticist called Graham Hittman, who's based at Ball's Health Trust in London.
And it was FP7 funded. Enormous amount of money, actually.
But then this went across, I think, eight different countries and 18 different centres.
And the big chunk of money went to on the sort of genetics and the and the big randomised controlled trial and I got a tiny bit of money,
I actually got £44,000 up to the €3 million to do the little qualitative side salad.
And some of us who in qualitative research are always rather cynical about this.
Kind of work, you know, that people come up to you and say, Can I put you on my grant application?
Because in amongst this enormous great genetic study, we'd like to put a little bit of qualitative tinsel.
Please, can you collect some narratives? And that'll kind of jazz up our rather boring genetics, blah, blah, blah.
So, in fact, I normally say no to these, but but Graeme's a good bloke.
He really does get the, the socio cultural stuff.
And he really did want to do this, not just as a bit of tinsel. So I was work package nine storytelling.
This is a paper from someone else. This is just the sort of a bit of background.
Why on earth would you need storytelling and a genetic study?
And this is what I want to talk about today. Epigenetics.
Do you know how much did anyone know about epigenetics? Anyone you know that we got know someone's going like that.
So, yeah. Okay. So the study of changes in organisms caused by modification of gene expression rather than the alteration of genetic code.
So two people have got the same gene, but somehow one of them expresses it in in a more advanced way than the other, that kind of thing.
And of course, all sorts of things affect gene expression.
And this is not my field,
but I've been working with these people because actually a lot of things that happen in our lives affect the expression of our genes.
So this paper, which was in The Lancet in 2011, type two diabetes, a big pandemic.
Now, what they say here in amongst a lot of other things is a very sort of detailed technical paper, is that in women with gestational diabetes,
in other words, women who weren't diabetic before they got pregnant, they're now diabetic when they are pregnant.
And then they're going to get become non-diabetic again after pregnancy.
So in women with gestational diabetes, two things give you problems.
One is overnutrition.
In other words, eating more than you need to eat, and the other is under exercising, taking less exercise than would be recommended.
That leads to what we call metabolic programming.
Okay. The sort of you know, there's a sort of couch potato metabolism here where there's different hormones and different
genes come out that will increase that woman's risk of subsequently developing type two diabetes.
But it will also lead to metabolic programming in the foetus, in the environment in which that foetus is developing and its genes becoming expressed,
that that will increase the risk of type two diabetes in the next generation.
Where I worked until recently in the east end of London, there are 50% of diabetes in secondary school children is now type two.
In other words, when I was at medical school, type two diabetes was something you got when you were in your sixties.
But if you're from an ethnic minority in the east end of London, it's something that you might well get when you're 13 or whatever.
So this is really quite worrying in terms of sort of epidemiology and the risks and things like that.
So it's a big problem. So of course, the geneticists say, well, we're going to have genes for diabetes, but I've got genes for diabetes.
My father had type two diabetes, but I'm not diabetic. Why not?
Because I try not to overeat and you know, I try not to.
Yeah. Whatever. Do lots of exercise now. So that's the sort of epigenetics in a nutshell.
Solutions to this problem will include,
and this is a quote from the paper Improvements in maternal public health programs in pre transition and post transition populations.
What do you mean by pre transition? The idea that economic transition.
So so you know if you live in rural China that you've got a low risk of diabetes
because everyone sort of eats quite healthily and runs around all the time. So knowing kind of what to call post transition is, you know,
when we're all sort of driving around in our cars in cities and working in office jobs, etc.
So that's one thing improvements in maternal public health,
but also provision of education to relevant groups about the risks of rapidly adopting Western lifestyles could be considered.
Are you happy with that as qualitative researchers? You know, sort of 12 pages of clever genetics and then they say, well,
this is going to be expressed differently when women eat too much, exercise too little when they're pregnant.
So there we go. We're going to we're going to provide them with education, you know, happy?
Well, no, it's a first of all, the whole obesity and diabetes is a hugely complex issue.
Yeah. And the whole subject has been hijacked with people with single issues and saying, oh, it's, it's fizzy drinks or oh yeah.
Or we've failed to address the problem because of the lack of a holistic approach.
And also the like, you know, and you've, you've expressed, you know, it's around walking,
cycling, just being active and not being overweight for which there are lots of conditions.
But the environment that we live in, you know,
built around cars so that the element which addresses the post-transition populations is we have to be really clear,
what is it about that first transition population?
And so if people aspire to, you know, in the dishwasher, you know, that's in some respects we are taking away from the individual,
you know, through normalisation of behaviours, the chance to radically change that.
So you can tell them you should walk more. But if it's just the environment that's in the United States where everyone drives, yeah, yeah, yeah.
That's brilliantly put. I couldn't have put it better myself. I think I would add to that the very, you know, it's it is over.
It's overly simplistic. It's what I call the Ontological Desert.
So the assumption here that the pedagogically and culturally naive model of behaviour change is that, you know, the learner here is the patient,
the person is an empty bucket and you'd put in education in the top like a sort of dollop of education and then that would change that behaviour.
It isn't going to work like that and anybody who's a clinician knows that it doesn't work like that.
Anyone who's tried to get either their parent or their child to change their behaviour by telling them it would be a very good idea if you do next.
It's it's just not the way any of us behave. So we submitted this paper actually.
It's been published now. I think this isn't this no version.
But if you look it up in BMC Medicine, it's it's actually pretty much top of the hit parade in BMC Medicine.
It's been downloaded lots of times and think people are very excited about the paper now,
which is good because when I wrote the lecture, I wasn't sure whether they were going to like it.
So we used narrative to try and unpack what was going on in South Asian women with diabetes in pregnancy.
And this is a it's a great picture, but it's a bit complicated to get your head around.
I'm going to talk you through it.
The the horizontal axis, you know, starts here when you're born and you go along here and then this is when you're old and presume you die about here.
So this is your your life. And then down here is the smallest unit, which is your genes.
And I know there's probably people who go under and further below that and mind.
Then you've got your molecules, you've got your cells, you've got your, your systems, and then here you've got what you do.
This is human behaviour. And then up here is your family, your social networks, your groups.
Then you've got your workplace in your school, then you've got national, then you've got the global level.
That's things like, I don't know, the Grexit or whatever, you know, all the things that are going to affect, for example,
the, you know, the global economic situation, which might affect whether you can afford to buy food, all that kind of thing.
So it's actually very easy because it's saying this is how you live, you know, this is your life.
And then this is the level at which we're analysing it.
And this is a lot of sociological gobbledegook.
But what it's saying. All these things are interrelated.
And the thing to really note is that there's a bit in it.
It's really simple, which is it's all about human behaviour.
In the end, it's how we behave, it's how we learn that the reason why different groups, different age groups,
genders, ethnic groups have different outcomes is largely because we behave differently,
but we behave differently for all sorts of reasons, partly because, you know, the genes are firing things,
but also because all these social things and particularly they look to opportunities and constraints.
To what extent, for example, does the built environment create opportunities for exercise or whatever?
So things are embodied at the level of human behaviour.
Okay, so what were we doing? First of all, we're trying to understand these multiple influences on behaviour,
which in turn all the risks to the metabolic health of a South Asian woman and her unborn child.
We wanted to theorise that is, generate potential explanations using this nested hierarchy model of how these different
influences interact and build over time is exactly what my colleague was suggesting we do.
I didn't brief him before, by the way, and then we wanted to inform the design of interventions because the interventions are far too simplistic.
They're all predicated on this empty bucket thing, you know, or that what's that behaviour change, you know.
Are you and are you? What's the one where you when you're giving up smoking or trying to persuade someone to give it a go on.
It's not the cycle of change. Yeah. Motivational interviewing, you know.
Yeah, that sometimes works a bit. But when you using it, don't you think I'm going to mean it?
There's all sorts of things happening with this person on in this model.
So I'm not saying the model is, you know, completely useless, but we wanted to kind of get underneath that.
So what do we do? Well, our sample was 45 women who had currently or previously diabetes in pregnancy.
And we decided that could be either gestational or pre-existing.
And the reason is that all the risk factors for gestational diabetes are pretty much the same as the risk factors for type two diabetes,
which is a sort of AB, you know, B energy balance that isn't right.
They either join the story sharing group where they, you know,
they came to a group and told stories in the group and we recorded those or we went and interviewed them at home.
So the original design was they would all come and join in story sharing groups,
which we'd run very successfully for last 15 years with middle aged people with diabetes.
They love coming to stories, sharing groups.
You try doing that with sort of 21 year old who's got one child is pregnant with another and he's kind of doing all sorts of things around the house.
They actually very few they wanted to come to the group, but they couldn't.
And so we went to the houses and interviewed them.
And it turned in, I think about in the end, almost two thirds of the women were interviewed at home and we just started to tell the story.
Tell me the story. We use narrative prompts.
Now, you've probably done semi-structured interviewing. You should go home.
And when you of talking to your partner about what they did instead of saying, what do you do today?
They're doing the semi-structured interview.
Go to some lists and start asking them. You can have a pretty funny conversation on a narrative interview is why you just go in and say, Well,
tell me about your diabetes and you use your own curiosity to prompt the next stage, you know, Oh, why?
Why were you so upset at that point or Oh, tell me more, or what happened next?
You know, those kind of the kind of questions you would have just in the normal conversation, a little bit more systematic than that.
And then we, of course, we translated and transcribed them some of the asking questions.
Yeah. Give you a couple of questions. Yeah, definitely. Is this approach likely to be far more fact based?
Because it seems to me, for example, in sustainability and behaviour change there's what's called a values action gap.
So is environment involved? Yes, it's very important to I believe an environment is really important to me, but they don't actually do it.
So actually there's a gap between what they believe and what they do.
Yet I think it's a latent opportunity, not necessarily a problem, but then anti and then you don't get it.
So if you're saying do you recycle? Yes, I recycle. But if you look at observed behaviour yeah there's a gap.
Yeah, yeah. You have to ask somebody through your process, you get away from telling what you actually did, tell me the story you get.
You really you might be getting closer to the real, but I don't think you'll get facts because facts are something else.
You know, facts. You get something. That the person you'd get something in the person genuine unless they're trying to deceive you.
But assuming they're not, you'd get their version of events just like you do when you are you to kids who've been fighting, who started it.
Know each of them genuinely believes that the other one started it.
And they will tell you a story that will, you know, justify that, but in a way that neither of them facts and they're both interpretations.
Let me go on. So how do we analyse this narrative data?
Because what you get with any qualitative data, it doesn't look messy.
It doesn't really look like data at all until you've done something with it.
Well, the first thing and this is this is quite important.
If you ever want to do narrative research, the first thing to do with stories is read them and read them again and again.
Read them three or four times. Go through them, mark things in the margin, put exclamation marks of the interesting bits until you are familiar.
That's called immersion. Then this description where you're really pulling out what's going on in this story, telling to say, Well, what?
What's the beginning, what's the model, what's the end, that kind of thing.
And then this theorise zation and I'm going to illustrate fear ization, which is give us an explanation,
try and get all that kind of nested hierarchy stuff to map to the stories or
the stories to map to the theoretical approach which I've introduced you to.
Then this illustration, which is either pick a particular narrative,
a real narrative from your dataset that illustrates the really the points you're trying to make or make one up, in other words,
generate another narrative which is kind of representative of all the narratives, but which is a bit of this one, a bit of that one,
and I'll show you that because, you know, people have commented that, hang on a minute, are you really allowed to make one up when you know?
Because of course, you if you take a real narrative, you've then got the confidentiality problem, know when you're publishing and then validation,
which is to go back to the people who gave you their stories and the advocates and the workers who are working with with these women,
some of whom are quite poor, some of the people illiterate, etc., feedback to them.
This is what we think your stories were telling is that, you know, does that resonate with you?
And the sort of respondent validation again, is a very important aspect of qualitative research.
We did use an Excel spreadsheet,
we did use a little bit of a framework analysis which you probably lean towards just to sort of organise the data and become familiar with it.
Yeah. Are you focus on responding to limitations because what can you do if you participant disagrees with your interpretation of the story?
What do you do if your participant disagrees with your interpretation of their story?
Have you got an example of when that happened? No,
but I've always so I've I've never really used respondent because with the rationale that I am interpreting
and at that point you stepping away from the story with as the storyteller whose story it is,
is your version of your accounts. Mm hmm. Well, first of all, yes.
Story. So what I've done in terms of this one in validation, I've taken back the sort of, you know, my my interpretation of all the stories.
Yeah, yeah. That's what we did. We didn't go back and respond and interpret a single story.
No, no, no, exactly. That's that we we I think precisely for that reason is that we go back and that's another
reason for actually creating a new story to say this is the kind of data we've been getting,
these are the kind of interpretations we're getting, and these are the kind of emotions that are coming through.
Does this resonate? And people are actually very good looking at that, saying, yeah, that's pretty good.
Actually, she was more upset than I would have been, but I can see that.
And so yeah, but yes, the whole business of respondent validation is a bit difficult.
The other reason it's difficult is that if anyone's ever done this,
usually your research participants are not that interested in looking at what you've done anyway, you know?
So we think it's a very worthy thing we think is ethical,
but in the end they've usually disappeared or they don't reply to your email or they know when you visit them, etc.
Okay, so let me give you some results. First result is well, what were the stories about?
Um, so one of the things we found was the stories had different time courses.
There was some short term stories, some medium term and some very long term.
And the short term stories, of course, were about their pregnancy and they depicted the pregnancy.
Most of these women depicted the pregnancy as absolutely ghastly.
So you go onto the NCT website or something and women would say, Oh no, it's wonderful.
I felt like a fantastic thing. I did my yoga and it's great and I had a massage and all that.
We didn't get that at all. You know, we got this horrible experience of pregnancy very,
very stressful and out of control and really difficult trying to find, you know, trying to keep the diabetes controlled.
And the second thing that came out was the idea that exercising made them ill, made them tired.
It made them it made their feet swell. It made them breathless.
Someone's nodding. Why, you know, is this effort that's going to work?
Go. All right. Okay. So, I mean, one of the things that came up in my research and time study.
Sweating. Sweating, lots of sweating yet makes them sweat totally.
And actually, we cited other research, much cited.
I'll talk to you afterwards. The idea that the very things people were recommending were making these women feel ill.
And so they might do a little bit of exercise, but then they'd have to go to bed because they felt so awful.
And the idea that they felt much better when they ate for two. I mean, I mean, some of them use this expression eating for two.
But, you know, the idea that eating to eating rice made them feel better.
And accounts of advice and other women would say to them, go to bed.
People write that thing. But if you look and if you've done the sort of discourse nurses a lot of people advise me to eat this week,
that this is absolutely part of the culture. You know, advising women what to eat, you know, is also part of white British culture.
Frankly, when you're pregnant, everyone chips in with a bit of advice. So I followed their orders rather than just the doctors.
And it's a brilliant hierarchy here, but also orders, you know, the community,
the peer group, the female peer group is allowed to order you, you know, what you eat.
So the medium term stories were about what goes on in our family, in our community.
And this the recurring storyline of a woman's work is never done.
That's my metaphor. But what there wasn't in in the women we interviewed was any sense of what I've
called or what other people have called the Taylor ization of domestic time.
So, you know, many of you go back home and then you'll say to your partner and look here,
I've taken the rubbish out and you know, you've cooked supper because I was at a lecture.
So it's probably my turn to do this.
And so you're all the time, you've got the taxi metre ticking as to how much work you've done to either bath the kids or cook the dinner or whatever.
That didn't happen in I'm not saying it never happened in Asian communities.
I'm saying that the women we interviewed who are mostly quite poor, East End, Bangladeshi,
Gujarat women, that there was this continuing expectation on them to be domestically active.
It was never finished. And that was why they couldn't come to the group's stories of progressive weight gain over years.
You know, in my first example in a bit, wait a second, to put in a bit more blah, blah, blah, blah, blah.
And that was completely normalised.
And then there was past experiences with the health service, a very common one, because people get very upset about this.
Is that sign on the wall in the GP surgery, one appointment, one problem.
You go in there and say, I've got sort of foot, that's it. If you've got a cough as well, you've got make another appointment.
And so that was the end of the GP. So are not saying all the time in the world, phew, you want to come along and tell me about your planned pregnancy?
I'd be happy to listen. It was the opposite to that.
So actually they had much better experiences with the hospital services than with the GP's and that is
probably something to do with the work load that the GP's have a lot of stuff about finishing stuff up.
All they've become is a waste and this sort of idea that this inexorable gain in weight was somehow expected and normalised.
And then the long term stories about the distant past, about genetic heritage, about everyone in our community is at high risk.
My grandmother had it, you know, back in Bangladesh, so and so had it all, that kind of thing.
But also about cultural heritage, about the you know, this is these are collective societies.
They're not they're not you're Californian. Let's have some me. Time and material, heritage, food insecurity,
memories of the Bangladesh famine from people who weren't even born when the Bangladesh famine happened, that it was part of the collective memory.
And if you know anything, you know the literature on food insecurity,
you'll know that a community memory of famine is going to make people more likely to eat a lot when they've got it,
because subconsciously you think, well, at some point you may not have it, okay?
And of course, this stuff about back home, back home, even though you've never been to Bangladesh, it's still known as back home.
And everybody's healthier and they didn't get diabetes. This was this isn't a myth.
This is true, except that if you're in Dhaka now, it's not true anymore, etc.
Okay, so let me link these up because now I've got a timeline,
the present here and then this is the ancestral past, the distant past, the recent past.
Got it. And you've got the short term stories. The medium term stories and the long term stories.
And these are all nested in. So if you look at the data, they don't say, I'm not going to tell.
You a long term story. It's the sort of little fragments that you have to tease out analytically.
That here we've got a very short term story. This happened three months ago.
Here we've got one of ten years ago. And here we've got one. You know, back home was actually when my grandparents lived in Bangladesh sort of thing.
So we drew that out and that was that was quite fun unpacking that.
I'm going to give you a fictionalised narrative now, now that you read that.
So everything in this is something that's that reflects the stories that we got.
So, for example, the stillbirth, you know, I was asked by a previous school, I got a minute, how can you say there was a stillbirth?
But actually, in our group of 45 women, there were quite a few stillbirths that women talked about.
And yet statistically, you wouldn't expect that many. But a few years ago I was working with a group who were working on the competition
inquiry on stillbirth and deaths in infancy and maternal diabetes is a very,
very common link with stillbirth.
So, you know, this is this is not do you see so although I'm not saying this is statistically representative,
I'm bringing out themes that are quite important. So this, I think, is quite important.
She, you know, she was getting advice, she was getting education, if you like.
She was trying. But, you know, this is there's a lot of things here that are going against this.
Let me give you the next page of this narrative. Can you see how the narrative weaves together these different layers of influence?
So you've got some physiological influences. This is something I'm quite interested in as a clinician.
I originally trained as a diver to suggest that actually it's not very nice being hungry and it's not very nice feeling tired.
You know, when you're hungry you get this urge to eat, especially if you're on insulin.
When you exercise and it makes you feel exhausted, those symptoms will stop you exercising.
So it's not just the sociocultural things, it's also the physiological influences here that I'm quite interested in.
And you go right up to the sort of macro level of these women didn't feel safe going out of doors, their husbands wouldn't let them go out.
So then my husband let me go out and exercise, you know,
after dinner in the east end of London and sometimes in the state between the advice people being given about calorie balance,
you know, the difference between exercise.
I didn't go, man, you didn't do running the way you would do.
And the alternative to be active, which you might find far easier to do.
Yeah, absolutely. And so the exercise advice that comes totally disembodied from all everything else that's going on in fat time as life.
She's not going to be able to it's not operationalise it.
It's not tailored to her. Absolutely. Another thing that this story illustrates that the game is very common is, oh,
she had the blood test and it showed that the diabetes had gone away completely staggered two years later and she gets diabetes,
whereas actually she was heading for diabetes.
Either you could see it, you know, in the story, but completely it was complete surprise.
All right. So this is the model that we developed based on those narratives.
And I'm giving you a very superficial version of the narratives.
And you can see how we've adapted the diagram, which I took from Tom Glass's work,
where we've still got maternal behaviours in the middle and we've got this energy inputs and energy expenditure.
But here what happens is these two things that happen, baby people focus on weight gain.
But I think there's also a big issue around loss of physical fitness.
It's like in the elderly, you know, a lot, not in half.
They're just out of shape. So what you have here is this weight gain and loss of fitness becomes the baseline for the next pregnancy.
And so it all just gets worse and worse and worse. But in addition, you've got foetal programming here from this adverse micro environment in utero.
So this foetus comes here and then when he or she is born, you know, they may have a high birth weight if they if they're,
you know actually macros so make but they they're actually starting off life on day one when they're born.
They already pre-programmed to have problems and then they're born into this
environment here so that by the time this person is 18 and having a first.
Pregnancy. Do you see what I mean? This is a vicious cycle, so you could pick that apart.
I'm sure you know people will. Although I haven't yet.
But I know this isn't the answer.
This is this is getting us a little bit hopefully it's getting us a little bit
further on that sort of epigenetics track than the quote I gave you earlier on.
I love this quote from Glasson, McCarty, who's whose diagram I showed you initially?
Human behaviour is sandwiched inextricably between ecology and biology.
That's a good one. So this number writes the rising prevalence,
the astronomically rising prevalence in poor South Asians in particular is mediated by patterns of behaviour in pregnant women,
what they eat, how much exercise they take that are very poorly matched to their metabolic needs.
Narrative research can begin to unpack these multiple interacting influences.
Speaking now, wearing my sociology hat, these behaviours, which are very much prompted by peer groups and the community pressure,
were intimate in that they were deeply personal, they were familiar.
That is, they were grounded in the richness of family relationships and traditions and they were morally resonant.
They were viewed as the right thing to do. And that is why these pregnancy related behaviours that, you know, I as a GP think are not quite right.
That is why they are so entrenched, they're so resistant to change, they're intimate, they're familiar and they're morally resonant.
The kind of education that we tend to offer South Asian women before,
during and after pregnancy is not going to work because it's not familiar and it's not morally resonant.
We have to make health advice more culturally meaningful and more morally resonant,
and the way we might do that is by paying attention to the narratives.
We need more imaginative interventions which are co-designed by families and
communities to actually resonate more strongly with these nested narratives.
So that's I think it's all I've got to say.
Yes, I think we've got a couple of questions.
Yes. But this description of the sort of feedback. Hmm.
Is there any evidence that second or third or fourth children are more likely to die?
It's a very interesting question. I don't know.
Someone is has probably addressed that question.
But you would have expected, wouldn't you?
I mean, certainly in subsequent generations, the offspring of South Asian mothers are getting it younger and younger.
I do know that. But you're right that it we we should be focussed on this.
There are many contributing studies. I'm from Pakistan with the guy with his decision and this is quite evident that there
are a couple of people from my own department who we have a vending machine expert,
a couple of people who have diabetes, and including three people who are after five or six time that use that for more risk of developing diabetes.
But that's that's the mother. That's the mother. But has anyone followed up all those children?
The follow up. Yeah. It's interesting that these children would want to visit you and.
Yeah, it is a dysfunction. And that would be the future.
Yeah. Yeah, absolutely. Thank you.
Thank you for that. I mean, it's I should say that the gift study has partners in both Pakistan and Bangladesh and actually not most of the feel.
The big trials are being done in South Asia.
But this qualitative study we did in the east end of London,
partly because I didn't fancy living in Bangladesh to actually I quite like to live among the cities, but it didn't happen to me.
Yeah. Who else had a hand up? Yeah.
Oh, sorry, you cherry. Yeah, well, I. You can see I talked about this.
This is about establishing what wasn't already known and the long, complicated words that I need to go into as well.
What is what do you feel will be the next stage in advancing this towards something that people can look at, applying them?
Oh, I think yeah, great question.
I I'm very interested in co-design as an approach which is getting people to design the interventions that would work for them.
So I've got a real problem with the MRC framework for developing complex interventions and I can say that into a podcast we are on the internet.
I think the idea that these experts are going to rigorously develop this perfect intervention and,
you know, test it in these clever trials, that's going to work.
You know, I need to go to Tower Hamlets, get groups of people together saying, come on, what is going to work for you?
And unless you know, because only then will we really embed these socio cultural narratives into the intervention.
Some of the most successful work that I did and I didn't do very much of it, sadly,
so got distracted to other things with working with the mosque, the local mosque in eastern London,
working with the imams, working with the also the women who work in the mosque,
the female religious scholars who really understand, you know, the Koran.
They understand the lives of the people that are trying to help.
And that's one of the imams said to me the words imam means teacher.
They said, we are the ones that should be doing the teaching and doing the behavioural interventions.
You are the doctors, you can bring some science to it. And I think if we could actually take the lead from communities and from, you know,
the wise individuals in those communities, you know, from what we do about that, what's going to work and what doesn't.
So that's where I would want to take this next. Obviously when you have a narrative, it's an intensely personal.
But even though you might aggregate individuals narratives towards some commonality, you are completely, you know.
Yeah, yeah, yeah. Totally.
So I thought your conclusion was very powerful, but much of the public debate that say, on obesity and diabetes is right up here.
And The Daily Mail's going to say about that well-known scientific journal.
Yeah. So tell us about that, because I thought what you were saying is that separate it from the individual,
their community and their environment and their genetics. Mm hmm.
What does it mean for public policy and where the debate at and where the debate needs to change?
Well, I think actually you can grow public policy from the community.
Yeah. From the bottom up. I think if you have a more enabling approach and actually some examples in
America of obesity schemes where they've taken a whole town and really yeah,
probably France as well, you know and then what happens is someone will say, gosh, look what they're doing in such and such a locality.
And of course you can't take that model and just replicate it everywhere.
You still have to grow it from the ground up wherever you are. But people can come along and take a look and say, Oh, this is how it all works,
and then go along and say, Now, how might we adapt to that to work here?
And it's it's a very different I'm going to write a module on co-design.
I'm not sure anyone's coming to SAP c next week.
I'm running a workshop on co-design of interventions actually with Claire Jackson, who's doing this in Australia.
I want to ask my colleague here about your work on South Asian women, about how this was similar or different.
I mean, I didn't feel graphic, so I spent about six.
Uh huh. Uh huh. Uh huh. And.
And we didn't know anything. It's mainly first generation.
Mhm. And so I it and not necessarily.
And we've been having diabetes the first generation.
Hmm. Absolutely. I mean, I had the privilege of listening to the.
Spending time? Yes. Shops and homes.
Yeah. And definitely the context.
Yeah. It's and I think in a way, anybody who's even vaguely sympathetic to qualitative research knows it's the context.
But how do you unpack all that? And how do you get from saying, look,
it's far more complicated than this behaviour is the stuff of educating women not to kind of succumb to their genes.
How do you get from that to an intervention that's going to work?
And you know, that is that is complex, but then it's not impossible and we should be doing it anyway.
So in the sense of the individual, it's different.
So there is a lot of emphasis on the person functioning in relation to the family rather than the person doing something for themselves.
Yeah, I totally agree. And actually we could go back and analyse our narrative.
A colleague of mine, one of our researchers, was taking it,
was taking one of these narrative interviews and she sort of halfway through it in the woman's flat,
and there was a knock at the door and a group of friends arrived.
So then immediately stopped the interview, cooked a beautiful, lovely, delicious meal.
Everybody ate it and they still cleared up. And then she carried on the interview.
Now, the idea that you might say to people, actually, I've got someone here who's interviewing me, could you come back a bit later?
It just doesn't work like that. Someone's arrived. Guests have arrived, right?
That's it. You have to be hospitable. It wasn't. Do you want a cup of tea?
It was alright, you know, sit down. The dutiful curry and that, you know, I mean,
we have to remember the huge cultural expectations and nothing brings that across more efficiently than narrative.
I suppose that's the that's the argument. She you had a question, I think you'd like to ask that and then that will happen.
Mm. Okay. Well I really enjoyed your tough love and your flair for the narrative.
I think what's coming next is hierarchy. Well, that's what I've called it. Yeah.
To be very evocative and it seemed to me and I could be very wrong about this term, it's the most superficial look at your work.
But there was a real emphasis on the individual and individual behaviour.
Mm hmm. Hierarchy. So that in the end, the. The advice was, you know, should be educational interventions were culturally relevant, morally over.
Um, but there seemed to be some element of sort of inevitability to the structure.
So I mean, even in the language of pre transition and post transition, it's sort of there's kind of this evolution.
The structure is just transition, you know, as it is and that, that, you know, the, the structure, the cultural structure of the rest.
It's it's hard to change. It's hard to change, isn't it?
But it's not impossible to change. I'm not saying. But is it part of the project?
Is it part of what you look at when you sort of say, well, what could we do with we haven't started the co-design work yet,
but certainly we've got another project going in the East End actually, which is much more quantitative,
where we're looking at prediabetes and actually using individual patient data from GP records to identify people who are very high risk of diabetes.
And I'm working with geographers who are drawing maps and things, so it's very interesting quantitative project.
But now we're saying, well alright,
having identified 27,000 people in one borough of London who are very high risk of developing diabetes and they're all still quite young,
what on earth are we going to do with them? So you could say, Oh, bring them in and send them to a dietician on on the strength of this.
So that's not going to work. So what will you do then?
Well, we could make these then safer to exercise it.
We could close down all those ghastly fried chicken shops.
So in the end, the reason why and Harry Rutter is very good on this, the reason why we do individual interventions, at least you can try.
Whereas what you can't do is, you know, change the way the East End is.
Having said that, this is another project we're doing on the Olympic legacy in Newham.
Well, we did change the East and hugely we built the Olympic stadium swimming pool, running track, cycling track.
And the youngsters in Newham schools do not use those facilities.
We've got a paper in the press at the moment on that. So it's hard, even, for example, about Newham and Tower Hamlets after the Olympics.
They wanted people to exercise and the London Cycle campaign in particular came and more people did.
So yeah. And they really struggled to get ethnic minority people to get on the bicycle.
And so the one intervention which has worked really well is the buddy system where a friend
or colleague or somebody they know will take them and show them the route on a bicycle.
And they do it together. The one you can tell somebody that's interesting will be in the cycle.
They won't go with somebody they know and trust and they should do it together.
And you de-risk it for them. Well, that's yeah.
And actually we have been for, I mean, a good 15 years, we've been doing group work for older.
It's mainly women who come, but it's actually for both genders and any ethnic group.
And they've set up things like walking groups in parks, but it's got to emerge from what goes on in the groups.
What you can't do is set up groups in the park, I would say, and then expect people to turn up.
It's it's got to be grown. It's got to evolve. It's my view.
And when it does evolve, it can be quite good and quite powerful and enduring,
which is what some of the American examples funded by Robert Wood Johnson Foundation have shown.
But no, this is this is tough stuff. Thank you so much, Trish.
Thank you very, very much for that. Just.