How do structured education programmes work? An ethnographic investigation of the dose adjustment for normal eating (DAFNE) programme for type 1 diabetes patients in the UK

Social Science & Medicine 71 (2010) 486e493

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How do structured education programmes work? An ethnographic investigation of the dose adjustment for normal eating (DAFNE) programme for type 1 diabetes patients in the UK Julia Lawton*, David Rankin Population Health Sciences, The University of Edinburgh, Medical School, Teviot Place, Edinburgh EH8 9AG, United Kingdom

a r t i c l e i n f o

a b s t r a c t

Article history: Available online 31 May 2010

Structured education programmes (SEPs) for patients with diabetes and other chronic diseases are being widely adopted across the UK and elsewhere. Trials suggest they are more efficacious than didactic approaches, with patients showing improvements in learning, blood glucose control and quality of life. However, the reasons for these improvements are not well understood. To establish how, and why, SEPs work, we undertook a qualitative investigation of the Dose Adjustment for Normal Eating (DAFNE) programme. DAFNE is a well-established SEP for type 1 diabetes patients in the UK, which teaches them to alter their insulin doses in order to improve dietary freedom and blood glucose control. Six five-day courses were observed and in-depth interviews conducted with 30 patients aged 18e59 years on completion of the courses. Prior to their courses, many patients had developed protective behaviours and risk-avoiding strategies, such as running blood glucose levels high to avoid hypoglycaemia, or low to avoid developing complications. Implementing the insulin dose adjustments recommended on the course often required patients to move out of comfort zones and take what they had perceived, initially at least, as risks. In order to understand and explain course dynamics and outcomes, we draw upon Adams’ concept of the risk-thermostat e which presupposes that all individuals are equipped with an internal instrument by which they gauge and respond to risk e and add a corporeal dimension to it. In doing so, we highlight the dynamic ways in which (embodied) group interactions and experiences, and their enmeshment with other aspects of course delivery, such as educator surveillance and employment of course rules, helped to enhance learning and promote patients’ transformations into insulin dose adjusting subjects. This included inter-corporeal processes through which patients recalibrated their risk thermostats in light of the insulin dose adjustment experiences of others. Ó 2010 Elsevier Ltd. All rights reserved.

Keywords: UK Type 1 diabetes Structured education programme Patient experience Risk-taking Insulin Complex health intervention Risk thermostat Inter-corporeality

Background Type 1 diabetes is a chronic disease, often arising in childhood or adolescence, and resulting from destruction of insulin-producing beta cells of the pancreas, which regulates an individual’s blood glucose levels. Hence patients need to adjust and control their blood glucose levels themselves by taking insulin. If blood glucose levels are allowed to rise too high, patients expose themselves to a high risk of developing long-term complications such as blindness, amputation and stroke. Overly tight control, however, puts patients at risk of hypoglycaemic episodes (hypos) which may lead to seizures or periods of unconsciousness which may require emergency treatment. Hence effective diabetes control involves

* Corresponding author. E-mail address: [email protected] (J. Lawton). 0277-9536/$ e see front matter Ó 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2010.04.030

a balancing act on patients’ parts, entailing self-surveillance (normally achieved through undertaking self-monitoring of blood glucose (SMBG)), discipline, and, most fundamentally, riskmanagement. Many type 1 diabetes patients struggle to achieve good blood glucose control. Whilst it is recognised that the reasons for this are multi-faceted, patients’ poor understandings of the disease, and a lack of education and instruction on how to manage it effectively, have been widely implicated (Knight, Dornan, & Bundt, 2005). Indeed, concerns about patients’ poor diabetes knowledge and disease self-management, alongside dissatisfaction with the didactic educational approaches which predominated healthcare delivery in the 1970s and 1980s, promoted the development of structured education programmes (SEPs) in the 1990s (Norris, Lau, Smith, Schmid, & Engelgau, 2002). In contrast to didactic approaches in which education is simply imparted to individuals, SEPs encourage patients to actively participate in the learning

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process through group discussions, hands-on practice and individual goal setting techniques in order to promote self-efficacy and enhance learning (Norris et al., 2002). In the UK, the provision of SEPs for people with diabetes has now become a requirement of the National Service Framework for Diabetes, with similar developments occurring in countries such as Romania, Austria, Russia, Germany and Australia (McIntyre, 2006). Arguably, the increasing spread of SEPs reflects broader social trends, including the growing dominance of the rhetoric of choice and empowerment in public health discourses, and the growing emphasis now placed upon individuals to take responsibility for the day-to-day management of their disease (see Petersen & Lupton, 1996). Trials of SEPs for diabetes patients have shown them to be more efficacious than didactic approaches (Norris et al., 2002), with SEP graduates experiencing improvements in their diabetes knowledge, glycaemic control and quality of life, in the short-term at least (e.g. DAFNE Study Group, 2002; Trento et al., 2002). However, the reasons for these positive physical and social outcomes are not well understood. As commentators have observed, SEPs are complex interventions, hence it is difficult to determine what exactly their ‘active’ and ‘vital’ ingredients are (e.g. DAFNE Study Group, 2002; Deakin, Cade, Williams, & Greenwood, 2006; see also MRC, 2000). However, as they further point out, it is important to develop an understanding of how a complex health intervention ‘works’ in order to inform future programme development and evaluation (DAFNE Study Group, 2002; MRC, 2000). Despite the widespread adoption of SEPs for patients with diabetes, qualitative explorations of these programmes have been very limited, have tended to cohere around patient interviews/focus groups, and have principally been concerned with exploring whether, and why, approaches to diabetes management are maintained after SEP attendance (e.g. Booker, Morris, & Johnson, 2008; Cooper, Booth, & Gill, 2003). While patients have been asked what they liked about SEPs (Cooper et al., 2003), little or no attention has been paid to the processes and dynamics comprising the courses themselves; that is, to how SEPs are delivered and experienced, how they work, and why. In order to address this lacuna, in 2008/2009 we undertook an observational and interview investigation of one of these programmes. The Dose Adjustment For Normal Eating (DAFNE) programme DAFNE is a well-established SEP for type 1 diabetes patients in the UK which, like SEPs in many other countries, is an adapted version of the Diabetes Treatment and Teaching programme, originally developed in Germany (McIntyre, 2006). Whilst technically open to all patients who have had diabetes for more than six months, patients tend to be referred if they are experiencing poor or erratic blood glucose control. Course referral guidelines also stipulate that patients must be willing to inject and test their blood glucose at least five times a day and attend the entire course. Like other SEPs, DAFNE encourages active participation in teaching sessions through group discussions, ‘hands-on’ practice and problem-solving exercises. Using a standardised curriculum, patients are instructed how to adjust their insulin to match their carbohydrate intake in order to promote dietary freedom and better glycaemic control, this being a reversal of the historical practice in which patients were required to adapt the timing and content of their meals to fixed insulin doses (DAFNE Study Group, 2002). In order to make these insulin dose adjustments, patients are given guidance on how to count carbohydrates and use/interpret the results of SMBG. The course also comprises topics on nutrition, complications and pregnancy and offers instruction on how to deal with hypoglycaemia and the effects of physical activity, alcohol and sickness on blood glucose control. Patients attend for

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five consecutive days, in groups of 6e8 people. Courses are normally facilitated by two educators e a diabetes specialist nurse and a dietitian. As we have already reported (Rankin, Heller, & Lawton, in press), most patients came to their courses with a poor and fragmented understanding of their diabetes and how to manage it effectively. This typically resulted from: patients being diagnosed in childhood or adolescence and not retaining information imparted at that time; patients being restricted to brief appointments in adult clinics and/or lack of staff continuity in these clinics; the receipt of conflicting and contradictory information over time; or, because patients were using out-of-date information which had not been updated by health professionals (Rankin et al., in press). For these reasons, DAFNE’s comprehensive and diverse educational curriculum was uniformly praised, patients claiming to have acquired a much better understanding of their diabetes and how to manage it effectively as a result of course attendance (Rankin et al., in press). Clearly, the comprehensive educational curriculum is a key ingredient to this SEP’s success, as commentators (e.g. Knight et al., 2005) and studies of other SEPs have already highlighted (e.g. Cooper et al., 2003). However, what we wish to highlight and explore in this paper is the dynamic ways in which the course’s educational content interacted with other aspects of its delivery, most critically, the use of a group-based format. As we will attempt to show, such interactions not only enhanced the depth and breadth of learning which took place, but also, at a deeper and more fundamental level, they led to transformations in course participants’ perceptions of, and orientations to risk (and risk-taking), and, associatedly, their conversion into insulin dose-adjusting subjects. In developing this aspect of our analysis, we will take Adams (1995) notion of the “risk thermostat” as our conceptual starting point. Whilst this concept was originally developed to understand traffic accidents, and promote road safety, we will show that, with some refinements, it is also salient to understanding the dynamics and outcomes of the DAFNE courses which we observed. The risk thermostat According to Adams (1995), we are all equipped with a “risk thermostat”; that is, with an internal instrument by which we gauge a particular risk (such as that of slipping on an icy road if one turns a bend too quickly), and undertake ‘risky’ behaviours in light of our risk assessment. Hence one of the claims which Adams makes is that road safety interventions are only likely to be effective if they affect the settings of people’s risk thermostats, this being part of his broader contention that, “people modify both their levels of vigilance and their exposure to danger in response to their subjective perceptions of risk” (p. 13e14). In seeking to understand and account for why there appear to be large variations in the settings of people’s risk thermostats, Adams draws heavily on the work of cultural theorists, such as Doulgas and Wildavsky (1983), and argues that people’s subjective perceptions of risk and approaches to risk-management are culturally and contextually informed. Hence one of his key contentions is that, depending on one’s previous experiences of, and exposure to, particular kinds of risk, and, the kind of culture or group to which one belongs, the setting of one’s risk thermostat will be different. A key implication of Adam’s analysis and argument e one which will be highlighted and explored in this paper e is that if one’s context, experience, or exposure to risk (and risk-taking) changes, this may lead to a resetting of one’s risk-thermostat. Amongst the type 1 diabetes patients who took part in the study reported here, this, as we shall show, entailed a changing perception of the risks associated with making insulin dose adjustments which then impacted on, and influenced, the risk-taking (insulin dose

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adjustment) behaviours of others. In order to develop this analysis, we will begin by describing the study. We will then move on to looking at course attendees’ experiences of, and views about, receiving their education and instruction with others; how participants interacted with each other during the course; and, the impact that these group dynamics, and other aspects of course delivery, had upon individual patients’ risk-taking behaviours, and broader course outcomes, such as enhanced learning, improved quality of life, and better blood glucose control. The study The study, which was conducted between June 2008 and February 2009, comprised observation of six DAFNE courses, in five centres across the UK, and in-depth interviews with attendees conducted within a week of course completion. All aspects of the courses, including methods of course delivery, formal and informal interactions between course participants (e.g. at teaching sessions and coffee breaks) and conversations and comments made during the courses were observed by DR in their entirety. These data were reconstructed in the form of detailed descriptive fileldnotes, accompanied by DR’s interpretive comments (patients who did not opt-in to the study were excluded from these notes). This observational material was used to inform the issues and areas explored with participants in their post-course interviews, and to contextualise and enhance interpretation of their interview responses. Participants, in their post-course interviews, were asked about their understandings and experiences of the course attended, and invited to reflect upon specific issues and events which had been noted during observation of their courses. Hence, while topic guides were used for these interviews, they were adapted and tailored to specific individuals who had attended specific courses (see below). Patients were also invited to talk about: the history of their diabetes and health service contact prior to the course; their (changing) experiences of managing their diabetes over time; their motivations for attending DAFNE; any changes they had made to their insulin doses and other self-management practices during the course; and, their views about how future courses could be improved. Interviews, usually conducted in the home setting, averaged 60 min, and were transcribed in full. Thirty patients and 12 educators took part, with consenting patients on the last two courses being purposively sampled to ensure that the final sample showed diversity in terms of age (range 18e56 years), gender (16 women, 14 men), socio-economic background/occupation, and years since diagnosis (1e45 years). Patients who were already enrolled onto designated DAFNE courses were provided with study information by health professionals at their pre-course assessments, and asked for their permission to be contacted by the research team prior to their course to discuss whether they would like to take part. Virtually all patients approached optedin (when patients declined, this was normally because they were not available for post-course interviews). Some patients did not attend a pre-course assessment in sufficient time to be recruited. Observations and interviews were staggered to allow for concurrent data collection and analysis, enabling issues and themes identified during early phases of data collection to be examined and explored in greater depth in later phases (Strauss & Corbin, 1990). Following observation of each course, the fieldnotes were reviewed and specific questions developed for individual attendees. More generic revisions were also made to the topic guides to accommodate and explore emerging themes and findings. All interview data were also reviewed/analysed before DR attended the next course, in order to inform the kinds of observations which were made (for instance, after patients highlighted the importance they attached to review sessions in their interviews, very detailed

records were made of these in subsequent fieldnotes). Data analysis continued after completion of data collection, and involved the authors repeatedly reading through and cross-comparing transcripts and fieldnotes, each undertaking their own independent, iterative thematic analysis, informed by a social constructivist position which regards ‘reality’ as generated through human interaction (see Geertz, 1973). Individual interpretations were compared in regular data analysis meetings both during and after independent analyses of the data had been undertaken, in order to explore interviewees’ underlying reasoning, discuss deviant cases, resolve any differences in interpretation and to compare and reach agreement on recurrent themes. Data were then organised into initial and higher codes. Nvivo, a qualitative data-indexing package, was used to facilitate data coding and retrieval. At the point when data collection was stopped, no new themes were arising from the data. Pseudonyms are used below. Research ethics approval was granted by the National Research Ethics Service, Kings College Hospital Research Ethics Committee (08/H0808/53). Findings Coming together in a group: overcoming isolation While virtually all patients talked positively about DAFNE’s group-based approach in retrospect, only some had anticipated benefits from receiving their education with others in advance. These patients described the sense of social isolation which having diabetes had engendered in the past. In some cases, this was due to family and friends not “understanding how it is to be diabetic” as Julie, a childminder who had had diabetes for nine years, described. For others, isolation had arisen from keeping their disease status secret, due to their worries about being seen as “a bit of a freak show” because “of having to do all of those silly things, pull out the needles and test the blood”, as Chris, a graduate and performer in his twenties, explained. Thus, these patients saw DAFNE as presenting important opportunities to meet others with type 1 diabetes and share experiences. Others described how they had initially found the group-based approach off-putting because they were “more of an observer than a joiner-in” (Hazel). However, the greatest trepidation was expressed by those who were concerned that exposure to other people with diabetes would heighten their own feelings of guilt and inadequacy. This included Lindsey, a teacher in her fifties, who had been struggling with her diabetes management for many years, was overweight, and was experiencing very poor blood glucose control. Like other attendees, she had become very fearful of having hypos and, as a consequence, had got into “bad” habits, such as regularly snacking on biscuits, eating carbohydrate laden meals even when she did not feel hungry, and over-compensating when symptoms arose by “over-dosing on sugar”. Prior to the course, she described her confidence and self-esteem as having ebbed to an all time low, and she questioned whether she would be able to improve her diabetes control. Hence, the prospect of being in a setting where her behaviour and blood glucose control would be scrutinised by other people with diabetes had initially made her feel very vulnerable: “When I realised I0 d have to share my results with a lot of people I didn’t know. I was thinking, you know, maybe I’ll fail? Will they think I’m ridiculous because I can’t cope in the way that maybe they can?” Hence patients often experienced considerable relief on discovering that fellow DAFNE attendees also struggled to manage their condition, leading them to reassess their own self-perceptions. As Sally, a woman in her fifties, elaborated:

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“From everything that’s said, you realise that you’re not the only person with those problems, or the only person who’s puzzled or something, or. You lose that feeling of being well I’m totally thick about this because I haven’t got good control.” Coming together in a group, then, not only prompted patients to revise earlier feelings of inadequacy, guilt and failure, they also found that they had felt able to “open up” (Nathan) and “chip in” (Danielle) because they were not worried about being laughed at or judged by others. The group-based approach: enhanced learning As well as helping to raise their self-esteem, and overcome feelings of isolation, patients talked about how the group interactions had also enhanced their capacity to comprehend and assimilate information during the course. Patients, for instance, pointed to the lively and often animated discussions which had taken place within their groups in which: “we disagreed about things, people say ‘well, I don’t think that and I think that’, and through doing that you chew it over and you process it better” (Peter, school teacher in his 40s). Some also described how group members’ accumulated experiences of diabetes management, comprising “different variations, and different stories and tips about control” (Alistair), had enhanced the breadth of learning which had taken place e by virtue, for instance, of fellow attendees asking questions they themselves would not have thought to ask. This was also a potential benefit which educators had emphasised at the outset of their courses, when they asked attendees to total up the number of years which, between them, they had lived with diabetes for. While the figure for a group of 6e8 patients typically averaged 100 years, on one of the courses observed it was over 140 years. The accumulation of experiences which patients, together, brought to the group also helped to add credence and credibility to key teaching points on the curriculum. This was because there was invariably at least one patient on each course who could back up a teaching recommendation by making recourse to their own experience. A good illustration of this occurred when patients shared their experiences of having hypos behind the wheel, sometimes with very deleterious consequences, thereby helping to persuade others of the relevance and importance of testing their blood glucose levels prior to driving. However, the impact and importance of the accumulated lay evidence offered by the group, and the group dynamics more generally, became most apparent in the review sessions. These sessions, as we shall see, played a critical role in prompting, and enabling, patients to put their new learning into practice and make insulin dose adjustments. However, before outlining this analysis, it is first necessary to look at how patients were managing their diabetes prior to the course, together with the emotional, habitual and cognitive adjustments they needed to make e including adjustments to their risk thermostats e in order to be transformed into insulin dose-adjusting subjects. Life before DANFE: cocooning and risk-avoidance The main purpose of attending a DAFNE course was for patients to learn to make their own adjustments to their background and quick acting insulin doses, and to match the latter to food, in order to improve their blood glucose control. Making these adjustments, however, often required patients to break away from well-established routines and comfort zones in which, over the years, they had enveloped themselves in intricate webs of protective behaviours and risk-avoiding strategies. This included the practice many patients had adopted of eating large amounts of carbohydrates and/ or of deliberately running their blood glucose levels high in order to

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avoid severe hypos and the danger and indignity which could result from them. This included, Alistair, aged 27, who lived alone, and who described how he had put himself into a protective cocoon “by always running myself sugary overnight” after experiencing a “huge, huge event” a few years previously, during which: “the police came round, kicked in the front door, found me unconscious in bed, and the paramedics came round, and I woke up with two paramedics, two policemen, my mum, my mum’s friend and my brother all round my bed, wondering what’s going on.” Similarly, Frances, a junior manager in her early twenties, talked about how, prior to DAFNE, she had used “complex carbs like my security net kind of thing”, after having experienced several severe hypos in public, including one during which she had collapsed in front of her friends and had broken her ankle. At the other extreme, there were patients, such as Karen, a healthcare worker in her thirties with two young children, who had fastidiously kept her blood sugars very low over a number of years “by taking too much insulin” in order to lessen her risks of developing severe diabetic complications. Karen described how she had become very afraid of “of losing part of my leg” after she had witnessed severe diabetic complications and their devastating effects on those affected whilst working on a renal unit. While she had been able to allay her fears to some extent through careful and strategic manipulation of her insulin doses, this long-term practice had come at the cost of her losing her ‘hypo awareness’ (that is, her bodily ability to detect the early warning signs of her blood glucose levels falling too low), and had prompted her referral to DAFNE. Karen had been advised by the educators in advance of her course that, to regain this awareness, she would need to allow her blood glucose levels to rise. However, because of her anxieties about elevating her risk of long-term complications, she was left feeling very vulnerable and ambivalent about operationalising this advice. For some patients, too, the types of dose adjustments promoted on the course seemed unfamiliar or counterintuitive and, hence, were something they did not feel confident to implement, initially at least. For instance, discovering that the DAFNE approach of matching insulin to food would require a patient to take much larger insulin doses than they were comfortable and familiar with doing could initially provoke feelings trepidation and concern: “Oh God, I’m probably going to over-dose” (Julie). Initial anxieties and reservations about following insulin dose adjustment recommendations were also conveyed by those, such as Annette, a 36 year old IT specialist, who was very keen have a child and had enrolled onto DAFNE to help get “the spot on control” which was needed to minimise risk to the foetus were she to conceive. Having started the course, she discovered that, according to the DAFNE guidelines, she needed to reduce her doses of background insulin, which, as she later reflected, she had initially been “a little bit sceptical” about doing because, “if I was on too much insulin I0 d be having hypos, which I wasn’t.” Hence, she went on to talk about how, in order to make this adjustment, and override her worries about compromising her pregnancy plans, a “leap of faith” had been required. Doing reviews: becoming a dose-adjusting subject While the education received during the course helped patients to understand why they would benefit from altering their insulin doses, review sessions played a critical role in initiating the process of making these dose adjustments. Reviews were held at the beginning and end of each day and normally involved the whole group (patients and educators). In these, each patient’s blood glucose readings, taken at various points during the day, were presented on an overhead projector, along with detailed records

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they had made of: (a) the carbohydrate content of all meals and snacks consumed since the last review (listed as carbohydrate points (CPs)); (b) the amounts of quick acting insulin they had injected with these meals, to cover snacks/alcohol, and to correct for high blood glucose readings; (c) doses of background insulin taken before bed and/or on getting up; and, (d) instances when they had treated hypos, and how they had done so. The group often spent a considerable amount of time (15 min per patient was not unusual) and effort looking at these data in order to identify patterns, trends and associations between food intakes, the amounts of insulin injected and blood glucose levels. In light of these deliberations, decisions were made about whether a patient needed to make a specific adjustment to their background or quick acting insulin doses or if more data needed to be collected before a pattern or trend could be ascertained. Supervised risk-taking For some patients, the knowledge that their progress and data would be carefully monitored and reviewed by the group in these twice daily sessions had provided them with the confidence and reassurance they had needed to overcome their initial hesitancies and make the “leap of faith” which Annette had described. The involvement and oversight of the educators was seen as particularly important in this respect, as Danielle, who had initially been “very nervous” about increasing her doses of background insulin, explained: “If you make a change and it has a huge effect, you’re gonna need some immediate and expert feedback, you can’t wait to, you know, to stop getting massive hypos.” Alongside this expert input, fellow course attendees were also seen to have played a pivotal role in patients’ transformations to insulin dose adjusting subjects. Not only were fellow patients sometimes seen as more objective and hence better placed to spot patterns in their readings than themselves, patients also highlighted the confidence and reassurance that had been gained from making a dose adjustment informed by “so many minds working at once” as Wallace, a student, aged 20 explained, or from, “sharing the experience of doing, you know, charting unknown waters together,” as Fiona, a lawyer in her twenties, similarly elaborated. Recalibrating risk-thermostats: drawing upon others’ experiences This “sharing of experience of doing” also gave rise to additional benefits. Patients, for instance, commented that group-based reviews had presented more opportunities “to do the analysis” (Sarah, aged 54) and thereby refine their own pattern spotting and analytical skills. More crucially, they described how reviewing the whole group together had enabled them to draw upon a much larger body of experiential data than their own readings alone could provide and, in so doing, to test out and validate course teaching and recommendations by amalgamating and crosscomparing readings and experiences. This included Paul, an accountant in his forties, who talked about how, during the course of the week, he had been able to appraise, and reappraise, the personal risks and benefits of following course recommendations in light of drawing upon the dose adjustment experiences of other course attendees: “You can see the people who are really into it and putting it into operation and being quite successful. You, sort of, see other people who, maybe, weren’t sort of into it, and they weren’t having any real improvements. So it, to me, sort of showed, well, actually, yeah, if you do sort of put this sort of, DAFNE principles into operation, you can see that there’s a benefit here.”

Recalibrating the risk thermostat through rehearsing For some patients, especially those who had been particularly nervous or cynical about making insulin dose adjustments at the course’s outset, review sessions also presented important ‘rehearsal opportunities’ in which they had been able to use other patients’ experiences as a testing ground, template, or risk-assessment exercise before making an adjustment themselves. A particularly good illustration of rehearsing is provided by Ruth, a shop assistant, who had had diabetes for 33 years having been diagnosed at the age of 11. For many years, and like other patients who had been diagnosed some time back, Ruth had managed her diabetes in a very regimented way in which she had matched her food to fixed insulin doses. She also talked about how her very protective father had accompanied her to her diabetes appointments well into adulthood, had spoken and asked questions on her behalf, and of how she had not paid attention in the consultations or learnt much about her diabetes as a consequence. Ruth’s earlier practice of matching food to insulin, her fear of having hypos, and her perceived poor understanding of her disease, all fed into her reluctance to make even minor alterations to her insulin doses, despite having been moved onto a more flexible multiple daily injection regimen several years previously. As she described: “I wasn’t sure I was grasping it.and I was thinking, right, I’ll just stick to what I know best and then go to the hospital and let the doctor alter it for me.” However, during the course, Ruth made several adjustments to her insulin, a key one being to correct (i.e. inject extra quick acting insulin) when she recorded high blood glucose readings. As she later observed when prompted in her interview, correcting was something she had previously considered “too risky” and which she “would never have dreamt of doing” had it not been for the experience of other group members doing this themselves, and being reassured from observing their readings on the overhead projector that this was a safe and effective procedure which did not lead to hypos: “I thought, ‘well, it seems to be working with everybody else, and so obviously I need to try these things, you know.’” Ruth also reflected on how, during the course, she had reduced her doses of background insulin despite this being “something I was always very frightened of doing.” Again, the opportunity to draw upon other people’s experiences and data during the reviews had been pivotal to this transformational experience, and to a recalibration of Ruth’s own risk thermostat; Ruth, in this case, having noticed how other patients who had moved onto lower doses had achieved much better blood glucose control. Surveillance and shepherding Educators also played a central role in facilitating dose adjustments. During their interviews, patients tended to praise them for their expert input and oversight (see above) and their nonjudgemental, non-directive approach. However, course observations revealed a more complex picture. As these data highlighted, surveillance and policing were an integral part of the educator role. During the reviews, it was observed, for instance, that patients were praised when educators noted that they had undertaken ‘correct’ (i.e. DAFNE recommended) courses of action, such as adjusting their insulin prior to exercise. Conversely, patients were picked up for undertaking incorrect behaviours, such as when, for example, an educator established that a patient had treated a hypo by eating chocolate or biscuits, rather than following DAFNE recommendations, such as consuming a fixed volume of lucozade. Educators, on such occasions, tended to present patients’ mistakes or infractions of DAFNE rules as positive learning experiences for the whole group, and used these as opportunities to reinforce course

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guidelines and recommendations, thereby extending their supervisory and disciplinary gaze to the whole group. Observation of the reviews also highlighted complex and sophisticated processes of negotiation and persuasion by educators, in which they shepherded patients into making ‘appropriate’ (i.e. DAFNE recommended) changes to their insulin doses or stopped them from making ‘inappropriate’ ones. Shepherding was sometimes achieved by an educator simply asking and, if necessary, reframing a question until the correct response was given. However, on many occasions, educators also had to make recourse to course recommendations in order to persuade or dissuade a particular course of action, such as when Niall, on the second day of his course, suggested that he was going to start making adjustments to his insulin, at which point insufficient time had elapsed for patterns in his readings to be discerned. This resulted in a convoluted process in which the educators had to interject in various ways until he finally proposed undertaking the ‘correct’ course of action: Niall suggests he will increase his background insulin tonight. [Educator] asks “why, is there a pattern?” Niall responds, “should I leave it?” to which the educator says, “can’t see a pattern yet”. At this point [Educator] also refers to what she describes as “the DAFNE cardinal rule” to “only change one’s background insulin immediately if having a night-time hypo.” The other educator becomes involved at this point, and refers to what she describes as another “DAFNE rule”; namely, “before increasing background insulin, [you] need to test [blood glucose] at 3am”, to which Niall responds: “Will I set my alarm tonight then?” At this point, other members of the group chip in and suggest he should stay up and party. (Extracted from fieldnotes). Not coincidentally, in this and other examples, is the way in which educators’ interjections were pre-fixed with a reference to a higher authority (that of DAFNE), and/or used a rule-based lexicon: “DAFNE says.”, “DAFNE recommends that”, “according to DAFNE.”, “the DAFNE (cardinal) rule is that.” This kind of rhetorical strategy, arguably, helped to foster the sense of empowerment which many patients described since, by deferring to a higher authority of DAFNE, and using a shepherding approach, educators avoided being seen to tell patients what to do. And while, arguably, the employment of rules may have served, at a deeper level, to promote compliance and obedience e the construction of a ‘disciplined subject’ (Foucault, 1977) willing to set their alarm at 3am, for instance e from patients’ own perspectives, rules were often seen to help engender confidence and the sense of accountability some needed to move out of their comfort zones and implement insulin adjustments. Rules and accountability A minority of patients did claim to have found the DAFNE approach “very pedantic” and “a kerfuffle” as Louise put it, and/or described some elements of the course as “patronising” and “extremely prescriptive .its very, the rules are very rigid” (Fiona). However, the majority described appreciating and valuing being given “fairly simple rules and formulas to follow” (Thomas). As Sally, who had experienced “hit and miss” management prior to DAFNE, elaborated, “I liked being told that one unit of insulin can do this to you, your blood, because it’s all very formulaic, the methodological approach of ‘if this happens, do this.’” For these patients, the presentation of rules and formulas, which they saw as having been “validated and things like that, and double-checked” (Frances), was seen as offering a much easier, precise and persuasive method of managing their diabetes than their previous “finger in the air guesswork approach” (Niall). Patients also talked about how

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DAFNE’s rule-based approach, in which certain parameters and conditions were stipulated at the course’s outset (such the requirement to undertake SMBG throughout the week and complete a course diary) had engendered a sense of “accountability to follow it”, as Peter explained. Indeed, some patients speculated that they would have experienced a “loss of momentum” during the course had it not been for knowing that their behaviour and progress would be scrutinised and appraised by their peers and the educators in the twice daily review sessions. Discussion In the study reported in this paper, we were able to enter the ‘black box’ (see Butler, 2005) of the DAFNE intervention and observe it from the inside, and from the perspectives of those who took part. In doing so, our findings suggest that, while there are various ‘vital’ elements to this SEP (see MRC, 2000), what makes the ingredients ‘active’ and ‘vital’ is the interaction between them. Indeed, as we have aimed to show in this paper, while the education delivered during the course was an important component of the DAFNE intervention, one which helped to foster patients’ transformations to insulin dose adjusting subjects, participants’ insulin dose adjustment decisions were not simply, or solely, a response to an expert (DAFNE) knowledge system. Rather, the implementation of patients’ learning during the course was prompted, and enabled, through the dynamics and interactions which took place within their groups, which were themselves fostered and promoted through the employment of DAFNE guidelines and course rules, and educator shepherding and surveillance. Whilst it has already been established that people with diabetes tend to learn better in groups than in one-to-one situations and experience better biomedical outcomes (e.g. Trento et al., 2002), this paper provides important and novel insights into why a groupbased approach can add value to an educational intervention. Not only did the delivery of education in a group setting promote enjoyment and concentration and, hence, the depth and breadth of learning which took place, the accumulated experiences of diabetes management which were brought together in the group also broadened the ‘lay evidence base’ which could be drawn upon to illustrate and ‘validate’ DAFNE teaching and guidelines. More crucially, we have seen how the group dynamics helped to foster the application of DAFNE teaching and the implementation of dose adjustments, which often required patients to move out of comfort zones and take what they had regarded, initially at least, as risks. Arguably, patients’ transformations to insulin dose adjusting subjects (and the improved blood glucose control they experienced as a consequence (see DAFNE Study Group, 2002)) can be partly explained by people’s greater willingness to take risks when others are involved in the decision-making process and are there to support them and share responsibility for the outcomes (see Dahlback, 2003). However, our findings suggest that that Adams’ (1995) concept of the risk thermostat is also very salient to understanding course dynamics, processes and outcomes. Indeed, we have shown how individual course participants could recalibrate their risk thermostats; that is, their perception of, and propensity to take, a particular risk (i.e. make an insulin dose adjustment) in light of their observations of, and exposure to, the insulin dose-adjustments made by other people on their course. In other words, and as Adams would himself contend, course participants’ risk thermostats were in a constant state of dynamic interplay during the five-day course, the result being that they were continuously altering and influencing each other’s risk-taking environments and risk-taking behaviours. To enhance this kind of analytical approach, Crossley’s (1997) writings on inter-corporeality are also very useful and salient, as

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this work serves to add an extra (embodied), and erstwhile missing, dimension to the risk thermostat concept. In applying a MerleauPontyian reading to Goffman’s (1971) Relations in Public, Crossley contends that behaviour should be understood as both meaningful and embodied, and society or a social context as comprising a series of inter-related, and overlapping, ‘sentient-sensible’ beings located within a common perceptual field. Thus, according to Crossley’s epistemological vantage point, “embodied actions are articulated in an embodied world which are created by, and create, that world,” (p. 147), the implication being that one person’s (embodied) behaviours can impact upon, and influence, the subjectivity and embodied actions of another. This kind of inter-corporeal process did indeed appear to occur during the DAFNE review sessions, in which patients’ (embodied) experiences of making alterations to their insulin doses e which were made visible themselves and others through the presentation of their SMBG data on the overhead projector e impacted on the dose-adjustments (embodied behaviours) made by others. Thus, whilst experiential learning is a widely assumed benefit of SEP delivery and attendance (see NICE, 2003), we would contend that this learning process needs to be understood as thoroughly and fundamentally corporeal, and as one which can be informed by the corporeality and embodied experiences of others. The oversight and supervision of the educators, and the use of rules and course guidelines, also played an important role in fostering patients’ insulin-dose adjustments and the (positive) impact of these on the experiential learning and dose adjustments made by others. While the employment of rules also served to engender a sense of accountability to follow course recommendations, patients, as we have seen, tended to perceive course attendance as empowering and present themselves as the agents of their actions and decisions. In accounting for this seemingly paradoxical situation, it is possible that a form of narrative reconstruction (see Williams, 1984) may have occurred, in which patients were keen to present themselves as competent and as grateful beneficiaries of the training and support received. However, Foucault’s ideas and work are also illuminating and useful, albeit with some modifications. Drawing upon a Foucauldian framework, it could be argued that the shepherding and surveillance observed on the courses (of which patients seemed largely unaware) functioned as a technique of power and a ‘practice of subjectification’ which rendered course participants productive (that is, willing to make dose adjustments) and trained and disciplined them to follow a set of (DAFNE-defined) norms (see Foucault, 1977, 1991). At the same time, however, and as Foucault’s work also serves to highlight, the operation of power/ knowledge need not be experienced as oppressive but, rather, as constitutive, empowering and enabling. This is particularly so when power/surveillance is operationalised in lateral ways (Foucault, 1978), which seemed to happen during the review sessions through patients monitoring their own progress by undertaking SMBG and sharing their data, a procedure which served to make their inner bodily states visible to themselves (see Mol, 2004) and fellow patients. We have also seen how, as the week progressed, patients became more involved in overseeing and reviewing each others’ conduct and progress through active participation in the review sessions, indicating that they had both internalised, and were now operationalising, DAFNE rules and principles independently of the educators. In highlighting these kinds of dynamic processes, however, our data and analysis also draw attention to a limitation to Foucault’s concepts and ideas. Whereas he presupposes the existence of an autonomous, self-regulated individual who is policed, or polices oneself, in the pursuit of health and selfimprovement, we would call for a conceptual vantage point e an embodied version of the risk thermostat e in which bodies/selves are treated and understood as enmeshed and as fundamentally inter-twined.

Patients often experienced feelings of isolation and inadequacy prior to their courses, due to their limited contact with fellow patients, and their stereotypical and erroneous views of how other people (successfully) coped with, and managed, their disease. Attending a group-based course thus created important opportunities to share and compare experiences, receive empathy and support, and revise negative self-concepts, an observation which may help to explain why SEP graduates tend to experience improvements in wellbeing and quality of life (see DAFNE Study Group, 2002). However, bringing people together for the purposes of a SEP also needs to be handled with great responsibility, care and expertise, given the powerful impact that one person’s (embodied) experiences can have upon the risk thermostats and risk-taking of others. Just as positive experiences, such as a patient making an appropriate and successful insulin doseadjustment, can be motivational, prompting others to make similar adjustments, negative ones could potentially have the reverse effect, leading to a form of ‘learned helplessness’ within the group (see Snoek, 2002). Hence, arguably, expert/educator supervision does have a critical role to play in maximising the benefits of delivering a SEP in a group setting, by ‘shepherding’ patients into making treatment decisions which are beneficial to both themselves and others and steering them away from ‘inappropriate’ ones. Our findings also suggest that, in developing future SEPs, continued, and careful, thought needs to be given to the size and composition of the group. Clearly patients can benefit from attending a group which offers an accumulated pool of experience. However, this consideration needs to be balanced against that of ensuring that group sizes are not so large that opportunities for interactions between participants, or for the daily review of individual data, are compromised, as this may reduce a SEP’s effectiveness. Acknowledgements This study was funded by the NIHR as part of the larger programme of research entitled: Improving management of type 1 diabetes in the UK: the DAFNE programme as a research test bed, which is led by Professor Simon Heller. We would like to thank Professor Heller and the other members of the DAFNE collaborative for their help, encouragement and support. We are especially grateful to Drs Debbie Cooke, Marie Clark and Celia Emery for their help with recruitment and securing ethics and R&D approvals, and to Lisa Horsburgh for administrative support. We would also like to thank all the patients and educators who took part in our research. References Adams, J. (1995). Risk. London: UCL Press. Booker, S., Morris, M., & Johnson, A. (2008). Empowered to change: evidence from a qualitative exploration of a user-informed psycho-educational programme for people with type 1 diabetes. Chronic Illness, 4, 41e53. Butler, M. O. (2005). Translating evaluation anthropology. NAPA Bulletin, 24, 17e30. Cooper, H. C., Booth, K., & Gill, G. (2003). Patients’ perspectives on diabetes health care education. Health Education Research, 18, 191e206. Crossley, N. (1997). Corporeality and communicative action: embodying the renewal of critical theory. Body & Society, 3, 17e46. DAFNE Study Group. (2002). Training in flexible, intensive insulin management to enable dietary freedom in people with type 1 diabetes: dose adjustment for normal eating (DAFNE) randomised controlled trial. British Medical Journal, 325, 746e751. Dahlback, O. (2003). A conflict theory of risk-taking. Small Group Research, 34, 251e289. Deakin, T. A., Cade, J. E., Williams, R., & Greenwood, D. C. (2006). Structured patient education: the diabetes X-Pert programme makes a difference. Diabetic Medicine, 23, 944e954. Doulgas, M., & Wildavsky, A. (1983). Risk and culture. Berkeley: University of California Press. Foucault, M. (1977). Discipline and punish: The birth of the prison. London: Penguin. Foucault, M. (1978). The history of sexuality. In An introduction, Vol. 1. New York: Pantheon.

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