Good afternoon, everyone. My name is Trish Greenhouse. Thank you for inviting me to give this talk today.
And I'm very sorry I can't be with you in person. I think you may have been told.
What's happened is that I've recently had a big operation on my neck and I'm not allowed to travel very much at the moment.
But hopefully at the end of this pre-recorded lecture, I'll be available in person via Skype to take some questions and respond to your comments.
Before I start, I'd like to acknowledge the input of many, many people patients, research participants,
and both clinical and academic colleagues too numerous to mention individually.
But this is a piece of work which has been going for nearly 20 years now,
and it couldn't have happened without the very enthusiastic and committed participation of a very large number of people,
which I'm going to talk to you about today, is framing the patient as a storyteller,
but also framing the story as a form of self-management, which is which is a slightly unconventional way of looking at things.
So I hope you'll bear with me.
I'm going to tell you about a study that has a quantitative randomised trial component as well as quite a big qualitative component.
Well, let's start by talking about stories. In every human society, people tell stories.
There's never been a human society discovered anywhere in the world where people don't tell stories to one another.
Jerome Brunner is one of the greatest academics on the subject of storytelling.
Last heard of Still Alive and Still Teaching at the age of about 99.
He trained as a psychologist at a time when psychology was very weighed down by behaviourism, by by things like stimulus and response.
And he was convinced that psychology was much more about the creation of meaning.
And he wrote this book, which I would strongly recommend that you buy if you're interested in narrative.
It's called Acts of Meaning. It's very short, very readable,
and it talks about the narrative structure of experience and the purpose of narrative as making meaning in our world stories,
as I'm sure you all remember from your childhood. Tell us about adventure and risk, about good and evil, about trust and fear, about joy and sorrow.
And they tell us about human virtues such as courage, loyalty, humility and honesty.
Stories reveal the unwritten rules that make up culture, whether it's the culture of a whole society or of a school, a workplace, perhaps a church.
And until you've picked up those unwritten rules, you don't really know how to behave in that particular culture.
But once you've picked up the rules through stories, you become able to sort of merge in with that culture.
Interestingly, there's some research that demonstrates that the story is the unit of learning the way we gather experience and above all,
the way we find out what to do in particular situations.
Now, one of the greatest writers on narrative was Aristotle, who lived many hundreds of years B.C., as I'm sure you all know.
And what Aristotle said was that stories are defined by five things.
They have a chronology that is unfolding over time.
They have characters, they have a setting.
They also have trouble this sort, this or some trouble in a story.
If nothing troublesome happens, we don't tend to tell about it.
But if something happens, you know, you drive to work and you don't tell your partner about it.
If you drive to work and nearly run over a dog,
you phone up your partner and tell them what the trouble was and how you managed to get out of the trouble and stories.
Also a plot.
And what plot is, is the juxtaposition of events and actions through linguistic devices such as repetition or metaphor in order to depict causality.
So the plot arranges the people in the events in the setting in such a way as to imply that certain things might have caused certain other things.
And it's this in emplacement that is very characteristic of the story form.
Now, let me move on to something else. Chronic illness, as I personally know very, very much at the moment, having an illness,
living with chronic illness is hard work and there's a lot of work being done recently by people about the burden of having an illness called May.
Talks about the burden of treatments, for example. I'm.
Now a few years ago, and it must be 20 years ago that this started.
I did a piece of work along with Cecil Hellman and a Bangladeshi colleague.
Chowdhury were women went and interviewed 40 Bangladeshi people with diabetes and he also interviewed a number of people who weren't Bangladeshi,
mostly white and Afro-Caribbean. They weren't really controls, but sort of comparisons.
And he found in the Bangladeshis in particular that people he interviewed could recall advice given them by the doctor or the dietician or the nurse.
And they greatly valued and respected that advice. But it didn't change their behaviour.
It was never linked in a personal story to a change in behaviour.
But what did change their behaviour was a story that they heard from another Bangladeshi person.
And this was very striking in pages and pages of transcripts, of interviews translated.
There wasn't a single instance of advice given by a health professional that changed behaviour,
but in almost every transcript there was a story told by another Bangladeshi that was linked to a change in behaviour.
And these are direct quotes from that dataset which as I say, is learned about a man who smoked and he had his leg cut off by gave up smoking,
heard about a woman who kept finishing off the food the children left.
She got very fat. So I started to measure the portions of my food.
And you can see here this direct link between a story hurt rather diffusely.
You know, this is almost overhearing gossip.
This isn't a story told by anyone particularly important, just a story heard in the vernacular, and therefore I changed my behaviour.
Well, after finding that, I think quite an important discovery.
It's probably one of the most significant things that my team have ever discovered in the kind of research that I do.
I got rather distracted into action research, developing stories, sharing groups with not just the Bangladeshi community.
That's where we started. But as I said before, the the phenomenon of storytelling is, is universal in human societies.
So we worked with a lot of different ethnic groups and also with white British groups developing these stories, sharing groups.
And one of the things that took the time in this action research was developing a sort of
training program for bilingual health advocates to support the stories sharing intervention,
because it's not a question of telling them stories, it's a question of inviting them to tell stories to one another.
We already know if we tell the stories as professionals, this doesn't work.
So we trained facilitators who ran groups in a lot of different ethnic languages.
This is a slightly out-of-date slide because we've done them in other languages with other ethnic groups since,
particularly recently, Turkish and Polish. And these groups are a lot of fun.
I've sat in on many of these groups. They meet once a fortnight and people tell stories about managing their diabetes.
So what is the sharing stories model? Because you can frame this as a complex intervention, but you have to define exactly what the model is.
And the model consists of three things. The first thing is spontaneous, informal, unstructured story sharing.
People are allowed to tell whatever stories they want about their diabetes in whatever order,
with no rules about what's important or what's legitimate.
Secondly, there is non directive facilitation by a bilingual health advocate or by a lay volunteer who is trained in the story sharing model.
So it's not a professionally led intervention.
And thirdly, the input of clinical professionals, because we clinical professionals are allowed to come if we get invited by the group,
must be as a response to the stories that are shared by the group participants, not a standard spiel.
I remember sitting in a group once, for example,
where a podiatrist had come along to talk about foot care and she had brought some PowerPoint slides and some flashcards,
and the group didn't want to see these prepared educational materials because they'd
been talking in the previous group about how expensive it was to buy special diabetes,
recommended footwear, and they wanted the podiatrist to respond to their complaint that these shoes were too expensive for them to buy.
They already knew what kind of shoes they should buy that you couldn't afford to buy them.
And that's an example of how when the patients and the participants are setting the agenda, you get a very different kind of discussion.
But also those stories are very important, very relevant to people's lives.
And they do tell you why people are not following the advice that they're given.
So here's a flowchart. Or the randomised controlled trial that we did a few years ago.
We took a population of people who were referred for diabetes education and before they had that COVID situation we found them and invited them.
Would they like to be in a randomised trial where they would either have group
storage sharing or they would go into standard education which was nurse led?
It was a sort of Desmond type intervention, if you know that that particular type of diabetes education and the person would have their own personal
interpreter if there wasn't a standard education group in a language that they felt comfortable speaking.
And those groups ran for six months. We then assessed the participants again, I'll tell you what things we measured on the next slide.
And then we left them six months again after the end of the group and did some more tests, both sort of biochemical, physiological and psychometric.
So we ended up with two datasets a quantitative dataset and a qualitative data set.
The quantitative data set we measured, among other things, the list of things on the left, which I'll I'll go through later.
But it's essentially sort of measures of diabetic control,
measures of attendance and measures of outcome such as body mass index and also two psychometric scales, quality of life.
And John, how his patients enablement scale which if you know it's very short very psychometric
can be very robust in the ask questions like as a result of this intervention,
are you more confident in managing your illness? And three other similar questions.
But we also had a qualitative dataset,
which was approximately 300 stories that had been shared spontaneously in these story sharing groups and which had been
captured via naturalistic methods by an anthropologist who was sitting in or someone who was working as an anthropologist.
I'm not sure they're all qualified anthropologists now. Some of these were bilingual, but many of them weren't.
And in fact, our main anthropologist didn't speak any of these languages.
But would the stories would be translated by the bilingual health advocate as part of the discussion.
And the way that worked very often was someone who had a very a story that they really
wanted to be captured in the research would invite the health advocate to translate it.
Please, please translate my story. This is very important. I would like the researcher to write it down.
Obviously there were other stories which people I didn't want to write down or didn't mind, and so they didn't get captured.
But we certainly had a dataset of of plenty of stories that were captured.
Let me talk, first of all, about how we analysed the qualitative data.
We analysed them in two ways, both thematically and narratively,
the thematic analysis where we were treating the story really as a collection of data fragments we went through.
And many of you will have done this. I tend to do it manually with with the highlighter pens,
but you can use qualitative software review if you're a software inclined and you go through coding different sections of text.
So you have a pink coder and you might sort of colour in things where they talking about
exercise or whatever it might be and you might use a different colour for a different,
a different theme. That's the way I do thematic analysis and looking for keywords, looking for all sorts of themes that come up,
and also themes that you weren't expecting that you've noticed.
Now I would say that thematic analysis is essentially deconstructive because you're taking the story and you're deconstructing it into little bits,
which are, you know, sorting it out into themes.
Let me tell you a bit more about the narrative analysis, because you may not have met this before,
although possibly some of you have with a narrative analysis.
What we're doing is we're looking at the story as a piece of literature, not as something to be deconstructed into themes.
So we're interested in the story as a whole,
and we're interested in analysing it for its literary features as defined initially by Aristotle, including things like scene setting.
What setting is being depicted? Characterisation, who's being depicted as the hero here?
Who's being depicted as the villain, the employment?
What literary devices are being used to convey narrative causality and so on.
But also we are analysing the narrative not just as a thing, as a text.
But also as a piece of drama to consider how the story is conveyed to the audience.
Let me give you an example. We held a lot of these groups in in rooms that had chairs around a low table, like a coffee table.
And sometimes participants would stand on the table when they had a story that they really wanted to tell and they felt very strongly about.
And I remember being in one group where a woman had received a letter from a doctor which had made her rather cross,
and she stood on the table and waved the letter around and then passed the letter around to all the participants
in the group so they could all have a look at whatever it was that she was cross about in the letter.
And that's what I mean by considering how the story is conveyed and also how the audience reacts.
Were the audience equally angry or where they could they not understand why she
was cross so that what I would call a matinee and framing of the of the narrative,
in other words, looking at the interaction between speaker and audience.
Now, I would say that the narrative analysis, as I've explained it here,
and I'm only giving you the very bare bones of this, is in essentially constructive analytic method.
In other words, you're getting quite a lot out of the narrative as well as what is in the text,
because you're also looking at how the story's being told and how it's being reacted to.
Okay. So the narrative analysis was was a lot of fun and it took us quite a long time.
Let me now give you a very broad brush summary of the quantitative data.
And in broad brush terms nothing changed compared to participants in standard education.
Those randomised to the stories sharing groups were better attended actually much better attended.
So 79% of group sessions were attended compared to 35% and attending the groups was associated with better enablement scores.
So I've said this is a subjective measure of confidence in managing one's illness,
but there was absolutely no change in any of the physical or biochemical outcomes such as HB one C weight, cardiovascular risk score.
And that is very often what people find when they do educational programs in diabetes.
These these parameters are very, very difficult to shift. So in summary, people felt better.
They enjoyed the groups, they were very keen to come to them, but they didn't actually do any better.
And so this was in that sense, a negative trial.
But let me tell you a bit more about the qualitative data.
It the narrative analysis revealed eight underlying storylines,
I should say the thematic analysis revealed all the things that people talk about when they talk about the diabetes.
They they revealed the concerns about their weight, concerns about diet,
the concerns about foot care, concerns about the things that doctors said, etc., etc.
But the most interesting bit about the the study was the underlying storylines within which all those themes began to make sense.
So the first storyline was something I've called Entering the Kingdom of the Sick, and I'm taking that to that metaphor from Susan Sontag.
She says, Everyone is a member of two kingdoms at certain times in their lives, the kingdom of the well and the kingdom of the sick.
And as you can see from this quote, people on being diagnosed with diabetes really feel terrified.
Devastated. This is something awful. It's incurable and a great sense of foreboding, a great sense that things are never going to be the same again.
Now, every single group that we've ever held and we've been holding these groups now for about 15 years spontaneously,
everybody in the group goes around and tells a sort of confessional tale of what happened when they were diagnosed.
We don't make them do this. The the facilitators don't do it. It just seems that that's how it all starts.
Here's my story about how I was diagnosed.
The second storyline is a bit more positive, and not everybody tells this story.
But in every group that I've ever sat in, somebody saves the day by coming up with the second storyline,
which is to say, Wait a minute, it's not so bad. You can actually rebuild your identity.
And this is coming from work by and some Strauss who talked about chronic illnesses, biographical disruption, spoilt identity.
And this particular quote is from a woman who's diabetic herself but is talking about her mother,
who's also diabetic and was initially based in Saudi Arabia when the diagnosis was made.
And she. Sliding doors, watching the TV and eating and generally not being very well.
Rather making yourself worse. But then she went back to Somalia, where she that's where she lived.
And somehow lifestyle was a bit different that she had to do a lot of walking to visit her sisters, who live several miles away.
And she began to eat less and lost weight and became happier.
These are pictures that quote is that really encapsulates the core storyline of identity, rebuilding and diabetes.
And this recurred again and again across many different groups.
And the storyline is from being indoors in inactive and introspective and feeling sorry for yourself,
having been diagnosed to being out of the house, active and linking with others.
And one of the great things about some of these groups is shifting people from being stuck in storyline one to being able to get going on storyline.
The third storyline I've called becoming a practitioner of self-management.
Those of you who know the work of Etienne Wenger and Jean Lave on communities
of practice will know what I mean when I talk about becoming a practitioner.
It doesn't matter whether you're talking about learning to play the piano or sailing or becoming a parent or any of these things.
These are things that you have to learn through a community by picking up stories from people who can do it well
and by following what they're doing and gradually sort of immersing your identity into this community of practice.
And I've given you a little story here of a group that I started as Afro-Caribbean group.
They were telling their stories in English, fortunately, so I could follow them.
And this was a gentleman who was the only man in the group, as I recall.
And there were a lot of African Caribbean women in the group who would talk about their shopping and their cooking.
And this chap's wife had recently died, and she'd been doing all the cooking and shopping.
And gradually, over the space of 12 groups sessions, he began to pick up what they were talking about.
And he one day came in very proudly and told his story about how he'd been to the market
and bought these vegetables and gone back and cooked them just as they told him to.
And he had begun to get going in this practice of healthy eating rather than eating sort of junk food in tins.
So that was that was becoming a practitioner. The fourth storyline I've called living a disciplined and balanced life,
and this storyline was very nested in religious metaphors and religious justification.
And I've given you an example of a group of times in which was a muslim group, I think it was Bangladeshi,
where one group member had said, Well, I'm going to die anyway, so why bother doing all these tests?
Why bother following a healthy life? And this drew very strong criticism from the other members of the group who saw
great religious value in taking care of one's own diabetes and achieving balance,
that there is nothing in the Islam religion and certainly nothing in any of the great
religions that say that you should really just sit there and let the diabetes take over you.
And I was really very interested in in the fact that professionals sometimes have a rather negative view of Islam, whereas actually,
the more people I talked to in the East End of London,
the more they they confirmed what I'd seen happening in the group, which was actually the Koran or the Islam.
Religion is very, very focussed on these things like balance, self-restraint, looking after the body and following a set of rituals.
And I was raised in the Christian religion and I could say exactly the same thing.
I remember my mother talking to me about balance and not being excessive and making
sure that you had your bath before you went to church and all that kind of thing.
Similarly, for the Jewish the Sikh religion, this is very much aligned with the kind of self-care behaviours that one would recommend in diabetes.
I actually did a study with a dietitian cook, Clare Grace, where we explored this in great detail with Bangladeshi religious leaders.
So this is sort of an aside to the to the main piece of work I'm telling you about that
we did focus groups within the East London mosque of Bangladeshi religious leaders,
both the male imams and also female religious leaders who had another title that I can't remember.
And PhD scholars and senior Islamic scholars.
And they confirmed absolutely the strong alignment to the teachings of the Koran with diabetes self-management behaviours.
But we also did focus groups of doctors and nurses and dieticians who were all rather negative and stereotypical.
About about Muslims and said it's all those imams, it's all those religious leaders telling people to sit around and not take exercise.
And this was simply not the case. In fact, it was the nuns who needed educating rather than rather than the imams.
And the fifth story line that came up in that story showing a project was what are called mobilising a can network.
Anyone who's been ill knows how important it is to be able to pick up the phone and ask a friend or relative to come around and help in some way.
People who've never known, people who don't have many friends or don't have the kind of friends that are capable
of coming around and helping and also helping educate are going to do worse.
And this is a quote from some poor lady who really didn't have anyone to help look after her or help advise her,
whereas many of the participants in our groups were quite active in helping other people.
And the ability to mobilise a care network was another storyline in in our dataset.
The sixth story line I've called Navigating and Negotiating in the health care system, where it's partly about gaining access to care.
But also once you've got your place in the GP surgery or in the in front of the diabetes nurse or whatever,
to actually be able to put your case and defend what you're doing,
perhaps in the face of a health professional who's who's telling you you're doing something else or disagreeing with you.
So I would also put in here managing conflicts.
So that came up quite a lot in some of the groups. The seven story line I've called Managing the Micro Morality of Lifestyle Choices.
So the stories that we heard often contained examples of small scale ethical choices, such as how to spend a limited family income.
Should I do X, which will have these consequences, or should I do Y which will have those consequences?
Should I spend some money on buying the kind of vegetables that I'm supposed to eat for my diabetes,
but which the rest of the family don't eat because they don't like? Or should I give the money to my daughter to buy a new pair of shoes for her son?
Now very often the behaviours of the people in our groups made complete sense once we nested them within these ethical frameworks, within the, the.
Within their own personal lives. The everyday ethics of lifestyle choices.
Of course, they don't make sense if you simply say, well, you must attend all your appointments.
But if you're not attending because you're looking after an elderly relative at home and you're really struggling because no one else can help you,
then of course, it makes ethical sense. And finally, storyline AIDS taking collective action.
Now, this isn't a story that was told in the group. This was a story that was enacted by one particular group.
This was a Bangladeshi group of women.
And they got very excited about the idea of going swimming because they they'd got very keen on exercise and some of them were going walking,
but some of them wanted to go swimming.
So they campaigned for women only swimming sessions at the local pool, and the council offered the sessions once a week.
Every Wednesday afternoon you can have 2 hours women only, but only.
Then they realised that they didn't have any swimsuits to wear because with the particular form of Islam that they followed,
even if it was women only, they had to be covered from head to foot.
And so they didn't turn up to the sessions and the council were rather cross initially,
but we found out that what they'd done this they'd got together as part of the group and a couple of them
had sewing machines and so they got some material and made themselves lovely long swimming dresses.
And once they'd made the dresses, then they turned up and went swimming.
Now the reason I like that is that it's an example of, if you like, narrative drama rather than just narrative,
and as a told tale that living it tells it as it in the sort of forward unfolding as well as looking back and telling a retrospective narrative.
So let me summarise the eight storylines that we uncovered in this in the study.
And I've given you the names of the sort of the theorists who've written about these, but I won't read them all out.
Entering the Kingdom of the Sick. Rebuilding Sports Identity.
Becoming a practitioner of self management. Living a disciplined and balanced life.
Mobilising a cannot work. Navigating and negotiating in the health care system.
Managing the micro morality of self care choices and taking collective.
Action. And those of you who are sort of familiar with any of these names might want to challenge me about,
you know, which and who I should have written against each of those.
But you can see the the way the storylines and a lot of richness to what was going on in these groups.
So let me summarise the seven.
The, the thematic analysis which I've given you the results of on the left revealed the seven practical issues which are covered
by the expert patient program and which pretty much everybody finds when they do research into self-management in diabetes.
But the eight storylines on the right are things that other people haven't found before.
And I think what this study adds is that the storylines give the practical issues two things.
They give them social meaning and they give them moral worth.
And hence the storylines are the mechanisms by which self-management comes to make sense for the person.
So here's my hypothesis, and I'm using these pictures from the American Association for Diabetes Education.
But you can see in the UK we have very similar lists of things that people with diabetes should be doing to look after themselves.
My hypothesis is that without story,
these self-management behaviours have no meaning and we might go right back to the 1930s where the young Jerome Bruner was,
was looking at the sort of stimulus response psychology of the day and saying that we've got to make this all have a bit more meaning.
So here's my conclusion.
From what we what we discovered in the Sharing Stories project, that story work converts self-care behaviours to acts of meaning.
So what are the next steps?
Because in the end, as I say, this was a randomised trial and it was a negative trial that nobody's diabetes actually became better controlled.
And I think the reason was that we were very interested in the stories sharing,
but the thing we didn't do was we didn't align it with individual clinical care planning, the self-care behaviour component.
So at some stage when I've finished all the other research studies that I'm currently got funding for,
I'm very keen to do a cluster randomised controlled trial to compare two groups, both of which would have the story sharing intervention,
one of whom would have standard care planning, but the other would have enhanced care planning from someone who would be sitting in
hearing these stories and then taking people aside individually afterwards and saying,
now the story you told, you know, suggested this, this and this.
Perhaps we'd like to really tighten up on your personal care plan in this particular area, but that's something that we haven't yet done.
But I'd be very interested in your comments on this. So thank you for your attention and for your questions.
And I very much hope the technology is now going to work for me to be mean and listen to your comments and hear your questions.
So thank you for your attention.