1 00:00:00,420 --> 00:00:05,940 Good afternoon, everyone. My name is Trish Greenhouse. Thank you for inviting me to give this talk today. 2 00:00:05,940 --> 00:00:09,990 And I'm very sorry I can't be with you in person. I think you may have been told. 3 00:00:10,260 --> 00:00:17,100 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. 4 00:00:17,340 --> 00:00:26,820 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. 5 00:00:27,570 --> 00:00:34,320 Before I start, I'd like to acknowledge the input of many, many people patients, research participants, 6 00:00:34,320 --> 00:00:39,420 and both clinical and academic colleagues too numerous to mention individually. 7 00:00:39,420 --> 00:00:43,499 But this is a piece of work which has been going for nearly 20 years now, 8 00:00:43,500 --> 00:00:51,660 and it couldn't have happened without the very enthusiastic and committed participation of a very large number of people, 9 00:00:52,350 --> 00:00:58,620 which I'm going to talk to you about today, is framing the patient as a storyteller, 10 00:00:58,620 --> 00:01:08,339 but also framing the story as a form of self-management, which is which is a slightly unconventional way of looking at things. 11 00:01:08,340 --> 00:01:09,690 So I hope you'll bear with me. 12 00:01:09,690 --> 00:01:17,220 I'm going to tell you about a study that has a quantitative randomised trial component as well as quite a big qualitative component. 13 00:01:17,760 --> 00:01:24,090 Well, let's start by talking about stories. In every human society, people tell stories. 14 00:01:24,240 --> 00:01:31,770 There's never been a human society discovered anywhere in the world where people don't tell stories to one another. 15 00:01:32,340 --> 00:01:38,580 Jerome Brunner is one of the greatest academics on the subject of storytelling. 16 00:01:39,270 --> 00:01:43,140 Last heard of Still Alive and Still Teaching at the age of about 99. 17 00:01:44,130 --> 00:01:53,820 He trained as a psychologist at a time when psychology was very weighed down by behaviourism, by by things like stimulus and response. 18 00:01:53,820 --> 00:01:58,620 And he was convinced that psychology was much more about the creation of meaning. 19 00:01:58,950 --> 00:02:03,779 And he wrote this book, which I would strongly recommend that you buy if you're interested in narrative. 20 00:02:03,780 --> 00:02:06,480 It's called Acts of Meaning. It's very short, very readable, 21 00:02:06,810 --> 00:02:17,790 and it talks about the narrative structure of experience and the purpose of narrative as making meaning in our world stories, 22 00:02:17,790 --> 00:02:29,010 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. 23 00:02:29,730 --> 00:02:36,360 And they tell us about human virtues such as courage, loyalty, humility and honesty. 24 00:02:37,200 --> 00:02:47,160 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. 25 00:02:47,730 --> 00:02:54,750 And until you've picked up those unwritten rules, you don't really know how to behave in that particular culture. 26 00:02:55,170 --> 00:03:03,510 But once you've picked up the rules through stories, you become able to sort of merge in with that culture. 27 00:03:04,230 --> 00:03:13,800 Interestingly, there's some research that demonstrates that the story is the unit of learning the way we gather experience and above all, 28 00:03:14,010 --> 00:03:18,840 the way we find out what to do in particular situations. 29 00:03:19,350 --> 00:03:27,030 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. 30 00:03:27,360 --> 00:03:33,120 And what Aristotle said was that stories are defined by five things. 31 00:03:33,120 --> 00:03:37,560 They have a chronology that is unfolding over time. 32 00:03:38,160 --> 00:03:41,430 They have characters, they have a setting. 33 00:03:42,240 --> 00:03:46,709 They also have trouble this sort, this or some trouble in a story. 34 00:03:46,710 --> 00:03:51,030 If nothing troublesome happens, we don't tend to tell about it. 35 00:03:51,030 --> 00:03:55,840 But if something happens, you know, you drive to work and you don't tell your partner about it. 36 00:03:55,860 --> 00:03:58,290 If you drive to work and nearly run over a dog, 37 00:03:58,290 --> 00:04:04,679 you phone up your partner and tell them what the trouble was and how you managed to get out of the trouble and stories. 38 00:04:04,680 --> 00:04:05,460 Also a plot. 39 00:04:05,940 --> 00:04:21,030 And what plot is, is the juxtaposition of events and actions through linguistic devices such as repetition or metaphor in order to depict causality. 40 00:04:21,510 --> 00:04:31,350 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. 41 00:04:31,590 --> 00:04:37,230 And it's this in emplacement that is very characteristic of the story form. 42 00:04:37,710 --> 00:04:45,780 Now, let me move on to something else. Chronic illness, as I personally know very, very much at the moment, having an illness, 43 00:04:46,230 --> 00:04:56,250 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. 44 00:04:56,250 --> 00:04:59,430 Talks about the burden of treatments, for example. I'm. 45 00:05:00,300 --> 00:05:05,250 Now a few years ago, and it must be 20 years ago that this started. 46 00:05:06,210 --> 00:05:11,100 I did a piece of work along with Cecil Hellman and a Bangladeshi colleague. 47 00:05:11,640 --> 00:05:21,629 Chowdhury were women went and interviewed 40 Bangladeshi people with diabetes and he also interviewed a number of people who weren't Bangladeshi, 48 00:05:21,630 --> 00:05:27,630 mostly white and Afro-Caribbean. They weren't really controls, but sort of comparisons. 49 00:05:27,960 --> 00:05:37,740 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. 50 00:05:37,740 --> 00:05:41,970 And they greatly valued and respected that advice. But it didn't change their behaviour. 51 00:05:42,000 --> 00:05:46,710 It was never linked in a personal story to a change in behaviour. 52 00:05:47,100 --> 00:05:53,760 But what did change their behaviour was a story that they heard from another Bangladeshi person. 53 00:05:54,630 --> 00:06:01,350 And this was very striking in pages and pages of transcripts, of interviews translated. 54 00:06:02,010 --> 00:06:07,050 There wasn't a single instance of advice given by a health professional that changed behaviour, 55 00:06:07,260 --> 00:06:14,490 but in almost every transcript there was a story told by another Bangladeshi that was linked to a change in behaviour. 56 00:06:14,760 --> 00:06:22,530 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, 57 00:06:22,590 --> 00:06:26,430 heard about a woman who kept finishing off the food the children left. 58 00:06:26,610 --> 00:06:30,420 She got very fat. So I started to measure the portions of my food. 59 00:06:30,540 --> 00:06:36,029 And you can see here this direct link between a story hurt rather diffusely. 60 00:06:36,030 --> 00:06:37,970 You know, this is almost overhearing gossip. 61 00:06:37,980 --> 00:06:45,420 This isn't a story told by anyone particularly important, just a story heard in the vernacular, and therefore I changed my behaviour. 62 00:06:46,080 --> 00:06:50,639 Well, after finding that, I think quite an important discovery. 63 00:06:50,640 --> 00:06:56,730 It's probably one of the most significant things that my team have ever discovered in the kind of research that I do. 64 00:06:58,290 --> 00:07:07,529 I got rather distracted into action research, developing stories, sharing groups with not just the Bangladeshi community. 65 00:07:07,530 --> 00:07:16,709 That's where we started. But as I said before, the the phenomenon of storytelling is, is universal in human societies. 66 00:07:16,710 --> 00:07:23,490 So we worked with a lot of different ethnic groups and also with white British groups developing these stories, sharing groups. 67 00:07:23,490 --> 00:07:27,959 And one of the things that took the time in this action research was developing a sort of 68 00:07:27,960 --> 00:07:35,250 training program for bilingual health advocates to support the stories sharing intervention, 69 00:07:36,300 --> 00:07:40,880 because it's not a question of telling them stories, it's a question of inviting them to tell stories to one another. 70 00:07:40,890 --> 00:07:44,580 We already know if we tell the stories as professionals, this doesn't work. 71 00:07:45,090 --> 00:07:51,480 So we trained facilitators who ran groups in a lot of different ethnic languages. 72 00:07:51,700 --> 00:07:57,210 This is a slightly out-of-date slide because we've done them in other languages with other ethnic groups since, 73 00:07:57,930 --> 00:08:03,149 particularly recently, Turkish and Polish. And these groups are a lot of fun. 74 00:08:03,150 --> 00:08:11,880 I've sat in on many of these groups. They meet once a fortnight and people tell stories about managing their diabetes. 75 00:08:12,720 --> 00:08:20,520 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. 76 00:08:21,180 --> 00:08:28,980 And the model consists of three things. The first thing is spontaneous, informal, unstructured story sharing. 77 00:08:29,250 --> 00:08:34,049 People are allowed to tell whatever stories they want about their diabetes in whatever order, 78 00:08:34,050 --> 00:08:37,350 with no rules about what's important or what's legitimate. 79 00:08:38,850 --> 00:08:48,360 Secondly, there is non directive facilitation by a bilingual health advocate or by a lay volunteer who is trained in the story sharing model. 80 00:08:48,750 --> 00:08:51,000 So it's not a professionally led intervention. 81 00:08:51,540 --> 00:08:58,710 And thirdly, the input of clinical professionals, because we clinical professionals are allowed to come if we get invited by the group, 82 00:08:59,670 --> 00:09:06,300 must be as a response to the stories that are shared by the group participants, not a standard spiel. 83 00:09:07,140 --> 00:09:10,049 I remember sitting in a group once, for example, 84 00:09:10,050 --> 00:09:17,490 where a podiatrist had come along to talk about foot care and she had brought some PowerPoint slides and some flashcards, 85 00:09:17,850 --> 00:09:25,290 and the group didn't want to see these prepared educational materials because they'd 86 00:09:25,290 --> 00:09:30,359 been talking in the previous group about how expensive it was to buy special diabetes, 87 00:09:30,360 --> 00:09:37,900 recommended footwear, and they wanted the podiatrist to respond to their complaint that these shoes were too expensive for them to buy. 88 00:09:37,920 --> 00:09:41,130 They already knew what kind of shoes they should buy that you couldn't afford to buy them. 89 00:09:41,580 --> 00:09:49,680 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. 90 00:09:49,770 --> 00:09:53,669 But also those stories are very important, very relevant to people's lives. 91 00:09:53,670 --> 00:09:57,660 And they do tell you why people are not following the advice that they're given. 92 00:09:58,200 --> 00:10:03,240 So here's a flowchart. Or the randomised controlled trial that we did a few years ago. 93 00:10:03,600 --> 00:10:14,460 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. 94 00:10:14,820 --> 00:10:19,350 Would they like to be in a randomised trial where they would either have group 95 00:10:19,350 --> 00:10:24,149 storage sharing or they would go into standard education which was nurse led? 96 00:10:24,150 --> 00:10:34,080 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 97 00:10:34,080 --> 00:10:40,140 interpreter if there wasn't a standard education group in a language that they felt comfortable speaking. 98 00:10:41,700 --> 00:10:49,740 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. 99 00:10:50,010 --> 00:10:59,700 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. 100 00:11:00,210 --> 00:11:05,750 So we ended up with two datasets a quantitative dataset and a qualitative data set. 101 00:11:06,000 --> 00:11:14,610 The quantitative data set we measured, among other things, the list of things on the left, which I'll I'll go through later. 102 00:11:14,610 --> 00:11:17,309 But it's essentially sort of measures of diabetic control, 103 00:11:17,310 --> 00:11:26,520 measures of attendance and measures of outcome such as body mass index and also two psychometric scales, quality of life. 104 00:11:26,520 --> 00:11:33,509 And John, how his patients enablement scale which if you know it's very short very psychometric 105 00:11:33,510 --> 00:11:38,339 can be very robust in the ask questions like as a result of this intervention, 106 00:11:38,340 --> 00:11:43,320 are you more confident in managing your illness? And three other similar questions. 107 00:11:44,970 --> 00:11:48,420 But we also had a qualitative dataset, 108 00:11:48,780 --> 00:11:57,209 which was approximately 300 stories that had been shared spontaneously in these story sharing groups and which had been 109 00:11:57,210 --> 00:12:06,810 captured via naturalistic methods by an anthropologist who was sitting in or someone who was working as an anthropologist. 110 00:12:06,810 --> 00:12:14,400 I'm not sure they're all qualified anthropologists now. Some of these were bilingual, but many of them weren't. 111 00:12:14,400 --> 00:12:17,910 And in fact, our main anthropologist didn't speak any of these languages. 112 00:12:18,090 --> 00:12:25,350 But would the stories would be translated by the bilingual health advocate as part of the discussion. 113 00:12:25,590 --> 00:12:30,360 And the way that worked very often was someone who had a very a story that they really 114 00:12:30,360 --> 00:12:38,669 wanted to be captured in the research would invite the health advocate to translate it. 115 00:12:38,670 --> 00:12:43,230 Please, please translate my story. This is very important. I would like the researcher to write it down. 116 00:12:43,860 --> 00:12:49,919 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. 117 00:12:49,920 --> 00:12:55,680 But we certainly had a dataset of of plenty of stories that were captured. 118 00:12:56,370 --> 00:13:01,620 Let me talk, first of all, about how we analysed the qualitative data. 119 00:13:02,310 --> 00:13:06,720 We analysed them in two ways, both thematically and narratively, 120 00:13:07,260 --> 00:13:14,940 the thematic analysis where we were treating the story really as a collection of data fragments we went through. 121 00:13:14,940 --> 00:13:21,149 And many of you will have done this. I tend to do it manually with with the highlighter pens, 122 00:13:21,150 --> 00:13:29,040 but you can use qualitative software review if you're a software inclined and you go through coding different sections of text. 123 00:13:29,040 --> 00:13:32,999 So you have a pink coder and you might sort of colour in things where they talking about 124 00:13:33,000 --> 00:13:36,120 exercise or whatever it might be and you might use a different colour for a different, 125 00:13:37,170 --> 00:13:48,510 a different theme. That's the way I do thematic analysis and looking for keywords, looking for all sorts of themes that come up, 126 00:13:48,510 --> 00:13:51,360 and also themes that you weren't expecting that you've noticed. 127 00:13:51,720 --> 00:14:00,690 Now I would say that thematic analysis is essentially deconstructive because you're taking the story and you're deconstructing it into little bits, 128 00:14:01,620 --> 00:14:05,640 which are, you know, sorting it out into themes. 129 00:14:06,570 --> 00:14:11,160 Let me tell you a bit more about the narrative analysis, because you may not have met this before, 130 00:14:11,160 --> 00:14:15,000 although possibly some of you have with a narrative analysis. 131 00:14:15,000 --> 00:14:21,720 What we're doing is we're looking at the story as a piece of literature, not as something to be deconstructed into themes. 132 00:14:22,170 --> 00:14:24,720 So we're interested in the story as a whole, 133 00:14:24,750 --> 00:14:35,760 and we're interested in analysing it for its literary features as defined initially by Aristotle, including things like scene setting. 134 00:14:35,760 --> 00:14:41,549 What setting is being depicted? Characterisation, who's being depicted as the hero here? 135 00:14:41,550 --> 00:14:45,360 Who's being depicted as the villain, the employment? 136 00:14:45,360 --> 00:14:52,380 What literary devices are being used to convey narrative causality and so on. 137 00:14:53,130 --> 00:14:59,280 But also we are analysing the narrative not just as a thing, as a text. 138 00:14:59,610 --> 00:15:06,300 But also as a piece of drama to consider how the story is conveyed to the audience. 139 00:15:07,020 --> 00:15:17,070 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. 140 00:15:17,250 --> 00:15:26,060 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. 141 00:15:26,070 --> 00:15:31,979 And I remember being in one group where a woman had received a letter from a doctor which had made her rather cross, 142 00:15:31,980 --> 00:15:40,350 and she stood on the table and waved the letter around and then passed the letter around to all the participants 143 00:15:40,350 --> 00:15:44,550 in the group so they could all have a look at whatever it was that she was cross about in the letter. 144 00:15:44,790 --> 00:15:51,209 And that's what I mean by considering how the story is conveyed and also how the audience reacts. 145 00:15:51,210 --> 00:15:56,040 Were the audience equally angry or where they could they not understand why she 146 00:15:56,040 --> 00:16:02,969 was cross so that what I would call a matinee and framing of the of the narrative, 147 00:16:02,970 --> 00:16:06,900 in other words, looking at the interaction between speaker and audience. 148 00:16:07,290 --> 00:16:12,689 Now, I would say that the narrative analysis, as I've explained it here, 149 00:16:12,690 --> 00:16:19,349 and I'm only giving you the very bare bones of this, is in essentially constructive analytic method. 150 00:16:19,350 --> 00:16:24,030 In other words, you're getting quite a lot out of the narrative as well as what is in the text, 151 00:16:24,030 --> 00:16:29,190 because you're also looking at how the story's being told and how it's being reacted to. 152 00:16:29,940 --> 00:16:33,780 Okay. So the narrative analysis was was a lot of fun and it took us quite a long time. 153 00:16:35,250 --> 00:16:40,139 Let me now give you a very broad brush summary of the quantitative data. 154 00:16:40,140 --> 00:16:47,010 And in broad brush terms nothing changed compared to participants in standard education. 155 00:16:47,310 --> 00:16:53,520 Those randomised to the stories sharing groups were better attended actually much better attended. 156 00:16:53,520 --> 00:17:04,770 So 79% of group sessions were attended compared to 35% and attending the groups was associated with better enablement scores. 157 00:17:04,950 --> 00:17:09,810 So I've said this is a subjective measure of confidence in managing one's illness, 158 00:17:10,350 --> 00:17:19,440 but there was absolutely no change in any of the physical or biochemical outcomes such as HB one C weight, cardiovascular risk score. 159 00:17:19,980 --> 00:17:24,690 And that is very often what people find when they do educational programs in diabetes. 160 00:17:24,690 --> 00:17:30,239 These these parameters are very, very difficult to shift. So in summary, people felt better. 161 00:17:30,240 --> 00:17:34,500 They enjoyed the groups, they were very keen to come to them, but they didn't actually do any better. 162 00:17:34,890 --> 00:17:39,210 And so this was in that sense, a negative trial. 163 00:17:39,930 --> 00:17:43,200 But let me tell you a bit more about the qualitative data. 164 00:17:43,650 --> 00:17:49,230 It the narrative analysis revealed eight underlying storylines, 165 00:17:49,410 --> 00:17:55,050 I should say the thematic analysis revealed all the things that people talk about when they talk about the diabetes. 166 00:17:55,380 --> 00:18:00,910 They they revealed the concerns about their weight, concerns about diet, 167 00:18:00,930 --> 00:18:04,770 the concerns about foot care, concerns about the things that doctors said, etc., etc. 168 00:18:04,950 --> 00:18:14,670 But the most interesting bit about the the study was the underlying storylines within which all those themes began to make sense. 169 00:18:15,840 --> 00:18:25,020 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. 170 00:18:25,020 --> 00:18:32,430 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. 171 00:18:33,270 --> 00:18:41,670 And as you can see from this quote, people on being diagnosed with diabetes really feel terrified. 172 00:18:42,450 --> 00:18:53,190 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. 173 00:18:53,640 --> 00:19:01,440 Now, every single group that we've ever held and we've been holding these groups now for about 15 years spontaneously, 174 00:19:01,440 --> 00:19:09,080 everybody in the group goes around and tells a sort of confessional tale of what happened when they were diagnosed. 175 00:19:09,110 --> 00:19:14,250 We don't make them do this. The the facilitators don't do it. It just seems that that's how it all starts. 176 00:19:14,490 --> 00:19:17,910 Here's my story about how I was diagnosed. 177 00:19:18,480 --> 00:19:24,510 The second storyline is a bit more positive, and not everybody tells this story. 178 00:19:24,510 --> 00:19:31,860 But in every group that I've ever sat in, somebody saves the day by coming up with the second storyline, 179 00:19:31,860 --> 00:19:37,380 which is to say, Wait a minute, it's not so bad. You can actually rebuild your identity. 180 00:19:37,950 --> 00:19:46,890 And this is coming from work by and some Strauss who talked about chronic illnesses, biographical disruption, spoilt identity. 181 00:19:47,670 --> 00:19:53,219 And this particular quote is from a woman who's diabetic herself but is talking about her mother, 182 00:19:53,220 --> 00:19:58,230 who's also diabetic and was initially based in Saudi Arabia when the diagnosis was made. 183 00:19:58,230 --> 00:20:03,410 And she. Sliding doors, watching the TV and eating and generally not being very well. 184 00:20:03,680 --> 00:20:10,820 Rather making yourself worse. But then she went back to Somalia, where she that's where she lived. 185 00:20:11,180 --> 00:20:17,570 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. 186 00:20:18,230 --> 00:20:21,950 And she began to eat less and lost weight and became happier. 187 00:20:22,440 --> 00:20:31,700 These are pictures that quote is that really encapsulates the core storyline of identity, rebuilding and diabetes. 188 00:20:31,700 --> 00:20:35,990 And this recurred again and again across many different groups. 189 00:20:36,860 --> 00:20:44,299 And the storyline is from being indoors in inactive and introspective and feeling sorry for yourself, 190 00:20:44,300 --> 00:20:49,280 having been diagnosed to being out of the house, active and linking with others. 191 00:20:50,750 --> 00:21:01,190 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. 192 00:21:02,390 --> 00:21:07,700 The third storyline I've called becoming a practitioner of self-management. 193 00:21:08,360 --> 00:21:12,919 Those of you who know the work of Etienne Wenger and Jean Lave on communities 194 00:21:12,920 --> 00:21:16,790 of practice will know what I mean when I talk about becoming a practitioner. 195 00:21:17,300 --> 00:21:24,770 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. 196 00:21:25,250 --> 00:21:32,990 These are things that you have to learn through a community by picking up stories from people who can do it well 197 00:21:33,170 --> 00:21:41,330 and by following what they're doing and gradually sort of immersing your identity into this community of practice. 198 00:21:41,900 --> 00:21:46,560 And I've given you a little story here of a group that I started as Afro-Caribbean group. 199 00:21:46,580 --> 00:21:49,700 They were telling their stories in English, fortunately, so I could follow them. 200 00:21:51,230 --> 00:21:55,010 And this was a gentleman who was the only man in the group, as I recall. 201 00:21:55,160 --> 00:22:00,260 And there were a lot of African Caribbean women in the group who would talk about their shopping and their cooking. 202 00:22:00,440 --> 00:22:04,280 And this chap's wife had recently died, and she'd been doing all the cooking and shopping. 203 00:22:04,550 --> 00:22:12,470 And gradually, over the space of 12 groups sessions, he began to pick up what they were talking about. 204 00:22:12,470 --> 00:22:16,549 And he one day came in very proudly and told his story about how he'd been to the market 205 00:22:16,550 --> 00:22:19,850 and bought these vegetables and gone back and cooked them just as they told him to. 206 00:22:20,090 --> 00:22:28,160 And he had begun to get going in this practice of healthy eating rather than eating sort of junk food in tins. 207 00:22:28,790 --> 00:22:36,290 So that was that was becoming a practitioner. The fourth storyline I've called living a disciplined and balanced life, 208 00:22:36,560 --> 00:22:42,980 and this storyline was very nested in religious metaphors and religious justification. 209 00:22:44,000 --> 00:22:50,120 And I've given you an example of a group of times in which was a muslim group, I think it was Bangladeshi, 210 00:22:50,720 --> 00:22:56,780 where one group member had said, Well, I'm going to die anyway, so why bother doing all these tests? 211 00:22:56,780 --> 00:23:02,839 Why bother following a healthy life? And this drew very strong criticism from the other members of the group who saw 212 00:23:02,840 --> 00:23:07,850 great religious value in taking care of one's own diabetes and achieving balance, 213 00:23:08,060 --> 00:23:15,709 that there is nothing in the Islam religion and certainly nothing in any of the great 214 00:23:15,710 --> 00:23:19,880 religions that say that you should really just sit there and let the diabetes take over you. 215 00:23:20,150 --> 00:23:30,290 And I was really very interested in in the fact that professionals sometimes have a rather negative view of Islam, whereas actually, 216 00:23:30,290 --> 00:23:33,170 the more people I talked to in the East End of London, 217 00:23:33,770 --> 00:23:41,719 the more they they confirmed what I'd seen happening in the group, which was actually the Koran or the Islam. 218 00:23:41,720 --> 00:23:49,280 Religion is very, very focussed on these things like balance, self-restraint, looking after the body and following a set of rituals. 219 00:23:49,550 --> 00:23:54,709 And I was raised in the Christian religion and I could say exactly the same thing. 220 00:23:54,710 --> 00:23:59,570 I remember my mother talking to me about balance and not being excessive and making 221 00:23:59,570 --> 00:24:02,240 sure that you had your bath before you went to church and all that kind of thing. 222 00:24:02,300 --> 00:24:14,330 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. 223 00:24:14,780 --> 00:24:25,010 I actually did a study with a dietitian cook, Clare Grace, where we explored this in great detail with Bangladeshi religious leaders. 224 00:24:25,280 --> 00:24:29,359 So this is sort of an aside to the to the main piece of work I'm telling you about that 225 00:24:29,360 --> 00:24:34,610 we did focus groups within the East London mosque of Bangladeshi religious leaders, 226 00:24:34,610 --> 00:24:40,940 both the male imams and also female religious leaders who had another title that I can't remember. 227 00:24:42,200 --> 00:24:46,069 And PhD scholars and senior Islamic scholars. 228 00:24:46,070 --> 00:24:52,190 And they confirmed absolutely the strong alignment to the teachings of the Koran with diabetes self-management behaviours. 229 00:24:52,760 --> 00:24:59,210 But we also did focus groups of doctors and nurses and dieticians who were all rather negative and stereotypical. 230 00:24:59,320 --> 00:25:06,820 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. 231 00:25:07,630 --> 00:25:17,730 And this was simply not the case. In fact, it was the nuns who needed educating rather than rather than the imams. 232 00:25:18,370 --> 00:25:25,540 And the fifth story line that came up in that story showing a project was what are called mobilising a can network. 233 00:25:26,920 --> 00:25:35,620 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. 234 00:25:36,370 --> 00:25:42,250 People who've never known, people who don't have many friends or don't have the kind of friends that are capable 235 00:25:42,280 --> 00:25:47,350 of coming around and helping and also helping educate are going to do worse. 236 00:25:47,740 --> 00:25:54,520 And this is a quote from some poor lady who really didn't have anyone to help look after her or help advise her, 237 00:25:55,090 --> 00:26:01,300 whereas many of the participants in our groups were quite active in helping other people. 238 00:26:01,660 --> 00:26:09,160 And the ability to mobilise a care network was another storyline in in our dataset. 239 00:26:10,390 --> 00:26:20,530 The sixth story line I've called Navigating and Negotiating in the health care system, where it's partly about gaining access to care. 240 00:26:20,680 --> 00:26:27,010 But also once you've got your place in the GP surgery or in the in front of the diabetes nurse or whatever, 241 00:26:27,190 --> 00:26:30,550 to actually be able to put your case and defend what you're doing, 242 00:26:32,020 --> 00:26:38,860 perhaps in the face of a health professional who's who's telling you you're doing something else or disagreeing with you. 243 00:26:39,880 --> 00:26:43,680 So I would also put in here managing conflicts. 244 00:26:44,560 --> 00:26:54,670 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. 245 00:26:55,360 --> 00:27:05,440 So the stories that we heard often contained examples of small scale ethical choices, such as how to spend a limited family income. 246 00:27:05,710 --> 00:27:11,980 Should I do X, which will have these consequences, or should I do Y which will have those consequences? 247 00:27:12,520 --> 00:27:18,910 Should I spend some money on buying the kind of vegetables that I'm supposed to eat for my diabetes, 248 00:27:19,180 --> 00:27:25,510 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? 249 00:27:26,440 --> 00:27:40,810 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. 250 00:27:41,830 --> 00:27:47,620 Within their own personal lives. The everyday ethics of lifestyle choices. 251 00:27:48,370 --> 00:27:52,269 Of course, they don't make sense if you simply say, well, you must attend all your appointments. 252 00:27:52,270 --> 00:27:58,300 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, 253 00:27:58,540 --> 00:28:06,400 then of course, it makes ethical sense. And finally, storyline AIDS taking collective action. 254 00:28:06,580 --> 00:28:12,490 Now, this isn't a story that was told in the group. This was a story that was enacted by one particular group. 255 00:28:12,820 --> 00:28:15,040 This was a Bangladeshi group of women. 256 00:28:15,820 --> 00:28:22,960 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, 257 00:28:23,110 --> 00:28:24,339 but some of them wanted to go swimming. 258 00:28:24,340 --> 00:28:31,569 So they campaigned for women only swimming sessions at the local pool, and the council offered the sessions once a week. 259 00:28:31,570 --> 00:28:35,260 Every Wednesday afternoon you can have 2 hours women only, but only. 260 00:28:35,260 --> 00:28:41,590 Then they realised that they didn't have any swimsuits to wear because with the particular form of Islam that they followed, 261 00:28:41,860 --> 00:28:44,620 even if it was women only, they had to be covered from head to foot. 262 00:28:45,520 --> 00:28:49,900 And so they didn't turn up to the sessions and the council were rather cross initially, 263 00:28:50,620 --> 00:28:56,889 but we found out that what they'd done this they'd got together as part of the group and a couple of them 264 00:28:56,890 --> 00:29:01,900 had sewing machines and so they got some material and made themselves lovely long swimming dresses. 265 00:29:02,200 --> 00:29:04,570 And once they'd made the dresses, then they turned up and went swimming. 266 00:29:05,020 --> 00:29:12,580 Now the reason I like that is that it's an example of, if you like, narrative drama rather than just narrative, 267 00:29:12,790 --> 00:29:23,080 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. 268 00:29:23,620 --> 00:29:31,270 So let me summarise the eight storylines that we uncovered in this in the study. 269 00:29:31,570 --> 00:29:37,770 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. 270 00:29:38,320 --> 00:29:42,070 Entering the Kingdom of the Sick. Rebuilding Sports Identity. 271 00:29:42,490 --> 00:29:47,860 Becoming a practitioner of self management. Living a disciplined and balanced life. 272 00:29:48,160 --> 00:29:53,020 Mobilising a cannot work. Navigating and negotiating in the health care system. 273 00:29:53,440 --> 00:29:59,050 Managing the micro morality of self care choices and taking collective. 274 00:29:59,230 --> 00:30:05,470 Action. And those of you who are sort of familiar with any of these names might want to challenge me about, 275 00:30:05,800 --> 00:30:09,850 you know, which and who I should have written against each of those. 276 00:30:09,850 --> 00:30:17,470 But you can see the the way the storylines and a lot of richness to what was going on in these groups. 277 00:30:18,130 --> 00:30:21,700 So let me summarise the seven. 278 00:30:21,880 --> 00:30:30,970 The, the thematic analysis which I've given you the results of on the left revealed the seven practical issues which are covered 279 00:30:30,970 --> 00:30:39,850 by the expert patient program and which pretty much everybody finds when they do research into self-management in diabetes. 280 00:30:40,360 --> 00:30:48,610 But the eight storylines on the right are things that other people haven't found before. 281 00:30:49,120 --> 00:30:57,400 And I think what this study adds is that the storylines give the practical issues two things. 282 00:30:57,820 --> 00:31:02,470 They give them social meaning and they give them moral worth. 283 00:31:03,160 --> 00:31:11,560 And hence the storylines are the mechanisms by which self-management comes to make sense for the person. 284 00:31:12,100 --> 00:31:19,600 So here's my hypothesis, and I'm using these pictures from the American Association for Diabetes Education. 285 00:31:19,600 --> 00:31:26,740 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. 286 00:31:27,190 --> 00:31:30,130 My hypothesis is that without story, 287 00:31:30,520 --> 00:31:39,700 these self-management behaviours have no meaning and we might go right back to the 1930s where the young Jerome Bruner was, 288 00:31:39,700 --> 00:31:47,590 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. 289 00:31:47,950 --> 00:31:49,959 So here's my conclusion. 290 00:31:49,960 --> 00:32:02,170 From what we what we discovered in the Sharing Stories project, that story work converts self-care behaviours to acts of meaning. 291 00:32:02,680 --> 00:32:03,879 So what are the next steps? 292 00:32:03,880 --> 00:32:10,660 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. 293 00:32:10,960 --> 00:32:14,410 And I think the reason was that we were very interested in the stories sharing, 294 00:32:14,680 --> 00:32:23,170 but the thing we didn't do was we didn't align it with individual clinical care planning, the self-care behaviour component. 295 00:32:23,500 --> 00:32:29,380 So at some stage when I've finished all the other research studies that I'm currently got funding for, 296 00:32:29,650 --> 00:32:37,810 I'm very keen to do a cluster randomised controlled trial to compare two groups, both of which would have the story sharing intervention, 297 00:32:38,110 --> 00:32:46,570 one of whom would have standard care planning, but the other would have enhanced care planning from someone who would be sitting in 298 00:32:46,810 --> 00:32:51,790 hearing these stories and then taking people aside individually afterwards and saying, 299 00:32:51,790 --> 00:32:56,080 now the story you told, you know, suggested this, this and this. 300 00:32:56,260 --> 00:33:05,680 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. 301 00:33:05,680 --> 00:33:11,860 But I'd be very interested in your comments on this. So thank you for your attention and for your questions. 302 00:33:11,860 --> 00:33:19,420 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. 303 00:33:19,690 --> 00:33:21,820 So thank you for your attention.