Contextualising the findings
In their immediate, post-course interviews, most patients reported liking and feeling motivated to sustain flexible intensive insulin therapy rather than reverting to former treatments, such as those comprising fixed insulin doses. Patients with a history of poor glycaemic control, such as F4, explained how this motivation arose from a perception that flexible intensive insulin therapy offered a more “logical process” for managing her diabetes than her previous regimen comprising two fixed daily doses of insulin. Continuing, F4 explained how the new approach enabled her to self-manage blood glucose levels precisely: “it’s all very formulaic and I like that, being given a formula and dealing with it” (F4.1). However, due to its technical complexity, most patients anticipated, or were already encountering, difficulties applying this regimen in their everyday lives, especially when deciding if changes to quick-acting ratios or background insulin doses were needed. For example, while praising the support offered by educators during her DAFNE course, F7 went on to express concerns about making independent adjustments without their continued input and oversight: “I’m slightly unsure, you know, now I’m basically on my own and I’ve reduced the background insulin and it’s slightly ‘ooooh, I’m not sure I should be doing that” (F7.1).
To address the technical difficulties of adjusting ratios and background doses, and to sustain effective use of flexible intensive insulin therapy, most patients, in both their post course and follow-up interviews talked predominantly about needing and/or valuing input from health care professionals. Support needed or received from family and friends featured much less prominently in their accounts. Hence, the findings reported below focus on health care professionals’ support. As patients’ accounts of clinical support needs at six and 12 months were very similar, this is reflected in the presentation of data below.
Seeking reassurance and trouble-shooting opportunities
Follow-up interviews revealed multiple instances where patients had sought out and consulted their course educators to seek affirmation and reassurance that they had followed the correct course of action. F3, for instance, who switched from using fixed doses of insulin, described “playing around with the ratios” in response to high blood glucose readings following her course, but subsequently discussed her actions with the educator: “just so that I know I’m going in the right direction” (F3.2).
Most typically, patients were apprehensive about whether they had interpreted patterns in blood glucose readings correctly and determined the correct course of action. These concerns led several patients to contact their course educators prior to making a change to treatment. For example, F7, who had earlier expressed concerns about making independent adjustments to insulin (see above), reported how, by the time of her second round interview, she had sought advice from educators before taking action to address high blood glucose readings: “I double-checked that I wasn’t having too little of the background insulin. I just wanted to make sure” (F7.2). Others, such as F4, who became worried about recurring fluctuations in blood glucose readings, also solicited educator input and support because she was uncertain how to address this problem on her own: “I’ve sort of said, ‘should I put my background up one [unit], it’s going high here?’ And she’s [educator] like, ‘well, give it until the end of the week, you know, let your body settle down a little, but don’t make changes too quickly” (F4.2).
Experiences of seeking support from health-care professionals
Health care professionals with relevant training
When seeking support, virtually all patients, as the above data suggest, expressed strong preferences for consulting their course educators, who many, post-course, now considered their first “port of call” (F6.2). Patients’ decisions to approach course educators were often informed by post-course experiences of having obtained unsatisfactory support from alternative sources. This included nurses who had not received relevant training or general practice staff from whom some patients received their routine clinical reviews and who, it was claimed: “haven’t heard of DAFNE” (F3.2) or “don’t know the subject… they’re not specialist” (M12.3). M4, for instance, who attended routine appointments at his local GP surgery, described how his practice nurse had told him soon after the course that he now knew “more about it [diabetes] than she does, which doesn’t inspire me with loads of confidence”. Dissatisfied with this experience, M4 concluded: “if you have a problem you might as well take it into [the diabetes centre at the hospital], even though it’s a long way to go and a bit inconvenient” (M4.2).
Lack of support at routine hospital appointments
At follow-up, several patients recounted how their routine hospital appointments were conducted by staff without DAFNE training and offered what they now considered nominal levels of support. Specifically, such patients reported how routine clinical review appointments tended to focus on HbA1c readings, (which is a measure of average blood glucose levels over previous months), whereas, post-course, patients now wanted, and felt they needed, a more holistic appraisal from health care professionals, which included a review of daily blood glucose readings. For example, F13 described how obtaining a HbA1c result considered satisfactory by her clinician had led to a cursory clinical review and had restricted opportunities to raise concerns about day-to-day fluctuations in blood glucose readings: “I think she [consultant] maybe thought because of my Hb[A1c] that everything was fine and that I didn’t really need to speak to her, so it kind of put me off” (F13.2).
Patients’ post-course critiques of clinical support were also informed by revisions made to their understanding of diabetes, which, coupled with an enhanced sense of empowerment, affected the dynamics of clinical consultations. For example, having participated in a DAFNE course, M9 explained how he had become: “more demanding [of health care professionals], just because I know a bit more about it now and I feel a lot more in control”. Attending an annual review and concerned that he had not been questioned in more detail about his blood glucose readings, M9 reported how: “I’m putting all this bloody effort in, can’t they do the same, they’re not taking much of an interest” (M9.3).
Accessing educators
While all patients had access to course educators’ telephone and email contact details, some found that calls or requests for advice left on answer-machines were not returned. This, as M9 explained, was off-putting and led to his decision to only contact educators with “really important issues” because “I don’t want to bother them unless I feel that I need to” (M9.2). More often, patients expressed a reluctance to initiate contact with clinicians/educators in-between scheduled appointments (e.g. clinical reviews), despite having questions and concerns. This included F16 who struggled with high readings but waited until a scheduled review appointment before seeking advice as she did not wish to present herself as a burden: “it’s one of my, just personal traits, is I find it very hard to ask people for help in most things” (F16.2).
In contrast to patients who struggled to approach educators, others described the benefits of seeking out and receiving technical advice and individualised trouble-shooting support from professionals with relevant training. For example, when seeking an explanation for high blood glucose readings, and noting that it was “down to me” to initiate contact, M12 began regular email exchanges with course educators who reviewed electronic records of his blood glucose readings “a couple of weeks at a time.” Furthermore, he described having made several changes to his insulin doses after receiving advice from educators during these communications: “I was doing a little bit of exercise and I was talking to [the educators] about what was happening with the readings and they suggested I should try to reduce it [background insulin]” (M12.2).
Organised follow-up meetings
Attendance at group-based follow-up
While educators provided graduates with a fixed date and time to attend a follow-up session at the end of their course, less than half of the patients attended the six week event and fewer still subsequent meetings. In several instances, patients implicated practical difficulties: “something to do with work got in the way” (M2.2) or had family commitments which took precedence. Likewise, F10, who worked full-time in a busy, professional role, described how a lack of flexibility in the time-tabling of follow-up events had made it difficult for her to attend: “I didn’t go to the six month event… I just kind of, eh, was slightly busy at work, knew that I had my annual review coming up anyway… and retinopathy screening and I thought, I’m not asking for any more afternoons off work to go to the hospital” (F10.3).
Several patients suggested that low rates of participation at six week follow-ups had limited the opportunities to replicate the dynamics/synergies of initial courses. After attending a follow-up with one other patient present, F8 explained: “it makes for a very different session [at follow-up] because a lot of those DAFNE sessions [on courses] are actually sharing experiences” (F8.2). Yet, despite small group sizes, patients who attended follow-ups described having derived several benefits. These included: opportunities to confirm others’ successful application of the DAFNE approach and observe “the improvement that people had [made] in six weeks” (F2.3); being able to discuss “common themes” (M11.2) and seek solace from others: “it was reassuring to find out that other people are having the same problems as you are… Christmas sucked” (M9.2); and, opportunities to counter isolation by speaking with fellow patients who: “know what planet I’m from… if I’m talking in diabetes language” (F3.2). Several patients also described how follow-up sessions were intrinsically motivational and stimulated renewed attention to regimen principles: “it [DAFNE] gave me the confidence to think, actually I can control this. … but I think follow-ups, just sort of re-confirm people’s confidence” (M5.2).
Limitations of group-based follow-up
As documented elsewhere [13] the group-based approach employed on the original five day DAFNE courses helped instil the knowledge and skills necessary to convert to flexible intensive insulin therapy, and was well received by virtually all patients. However, while patients, in their follow-up interviews, highlighted some benefits to be gained from attending follow-up sessions in a group, most indicated a preference and need for one-to-one support. This included M7, who described group-based follow-ups as mitigating opportunities for patients to: “talk about their own individual circumstances … everyone’s an individual and I think everyone has individual needs… and events happening in their lives” (M7.3).
Several patients also expressed dissatisfaction with reviews of blood glucose readings at six week follow-up sessions. While patients had collected blood glucose data for six weeks, the requirement for all patients’ readings to be reviewed meant there was only time to examine their most recent results. M14, for instance, described how educators had reviewed blood glucose readings that he had gathered over the preceding two or three days, which, he suggested, could result in a focus applied to an unrepresentative sample of results collected over “a very small period of that six weeks”. To allow for a more detailed examination of blood glucose readings collected over the six week time-frame, M14 suggested that he would have benefited from: “a bit of a one-to-one with [the educators] so they could have a look through your diary, sort of page to page, just have a look to see maybe if they’ve spotted something that I hadn’t spotted.” (M14.2).
In other accounts, patients sought and/or expressed a preference for individualised and tailored support, provided by specialists, that was responsive to changes in their personal circumstances and lifestyles. For example, F2 described having needed, and received, regular and intensive educator support after she became pregnant, to review and change quick-acting ratios and basal insulin doses, to control unstable and fluctuating blood glucose readings. Other patients’ need for specialist, individualised support also followed significant changes in life circumstances, which, in turn, affected their insulin requirements, in ways which were specific to themselves. For example, discussing his decision to “up the ante a little bit” in the month after attending the course M12 explained that he had contacted educators for support to adjust insulin to counter an increase in physical activity after moving from a sedentary role to one involving manual labour: “I’ve spent a year working out in the field… and my dosages changed big time, my diet changed big time” (M12.3). Highlighting an on-going need for support, this patient later reported how a subsequent injury had limited his physical activity, which necessitated further advice from educators about insulin adjustments.
Provisions to address unmet needs
To address their needs for individualised support and trouble-shooting opportunities, some patients suggested that it would be beneficial to have a dedicated “emergency line” (M8.1) or “twenty-four hour helpline” (F7.1), staffed by clinicians with relevant training: “[I’d] like the ability to … maybe phone up the diabetic nurses, the ones who are DAFNE-trained, and knock some things about if I had a question” (M13.1). While identifying this need for readily-accessible support, patients also conveyed concerns about placing additional burdens on clinical staff who, many felt, already had substantial workloads. Hence patients suggested that future support services should be delivered by dedicated staff: “perhaps somebody who was just 100% DAFNE, rather than having to split themselves into two or three different positions … and to know that you’re not going to be interrupting anybody’s clinics” (F6.3). Several patients also discussed how a “structured appointment system,” put in place post-course, might address concerns about unduly “bothering them [educators]” (F4.3). This system, it was suggested, could help patients who were reticent about making impromptu contact with educators. For example, F16, who, as described earlier, worried about burdening educators with her questions and concerns, felt that an appointment system: “would make it easier to approach them rather than being left to just approach as an individual” (F16.3).
Finally, patients described how the provision of “refresher courses” (M6.3), delivered by health care professionals, could address several needs, including: opportunities to access top-up or new information; and, re-education to aid patients’ recall and use of information that had not been well retained (e.g. the effects of sickness or physical activity on blood glucose control).