Background
Methods
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Meta-syntheses of diabetes qualitative research were identified and forwards and backwards citations found;
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Key authors were identified and their papers were located and screened;
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Key trials were citation chased and searches were made using the trial acronyms as search terms;
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Experts in the field were contacted for published and unpublished papers.
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Were among adults with T2DM,
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Conducted in the UK (reflecting current practice in the National Health Service),
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Published since 2000.
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Used recognised qualitative methods of data collection and analyses,
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Used longitudinal qualitative data collection – with two or more periods of data collection
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Used follow–up qualitative data collection of at least 12 months.
Methods
| Convenience sample: All patients with T2DM participating in an RCT (n = 89; 53 in the intervention arm, 36 in the control group) | Purposive sample: 30 patients with newly diagnosed T2DM participating in an RCT. Sampled to represent trial arm, recruitment site, and gender. | Purposive sample: 25 participants representing 4 groups depending on HbA1c control: ‘good’ (<7) or ‘poor’ (>9) (n = 13); or ‘improving’ or ‘deteriorating’ (n = 12) | Convenience sample: 40 patients with newly diagnosed T2DM. |
Sample | ||||
Diabetes duration at baseline (mean) | 6 years | 6 months | 6 years | 6 months |
Data collection | Cycles of semi-structured focus groups with all trial participants, pre- (n = 5) and post-intervention (n = 5). Group A at 6 and 12 months; Group B at 6 and 18 months; Group C at 12 months | Face to face interviews at 6 months (n = 30), and follow -up telephone interviews at 9 months (n = 29).( Trial paper [29] has 12mth data) | Semi structured face-to-face interviews at12 months (n = 25) ,and 24 months (n = 11).9 matched consultation sessions and telephone interviews at 36 months. | Semi structured face-to face interviews and fieldnotes at 0, 6, and 12 months (n = 40) and 48 months (n = 20). |
Analysis | Constant comparison. Source, method and theoretical triangulation. | Constant comparison. Thematic analysis. | Constant comparison. Thematic analysis. Construction of extended case reports over time. | |
Setting | Primary and secondary care, England | Primary care, South West England | Primary care, deprived area in North West England. | Primary and secondary care, Scotland |
Trial design | 89 patients, randomised control wait list design Group A were randomly allocated to the treatment initially (n = 30), whilst the Group B acted as the short-term control group (n = 23) These two groups were then combined to form the short term trial group. | 593 patients randomly assigned in a 2:5:5 ratio. Control n = 99, Intensive Diet n = 249, Diet plus Activity n = 246 | 591 patients randomly allocated in a1:2 ratio. Control n = 197, Call-centre treatment support n = 394. | N/A. 40 patients with T2DM. Explorations of variance, location of care (12.5% primary care, 87.5% secondary care), diet, medication, class and gender. |
Group C received the intervention at the end of the trial period (n = 36). | Patients randomized to ‘usual care’ received standard advice about diet from trial dieticians at their baseline visit, and were seen by a doctor blinded to treatment at baseline, six and twelve months [28]. | Patients randomized to the ‘usual care’ group continued with conventional treatment based on local guidelines, which had been in place for over ten years, supported by a continuing education program among all primary care practices [34]. | ||
Intervention | 8 week educational programme including: physical activity, exercise, relaxation and health topics. | Intensive diet (ID) or intensive diet plus activity (IDPA) | Tele-care phone support, titrated to HbA1c, to improve blood glucose control | Not applicable |
Trial results | At 6 months, intervention associated with benefits in HbA1c levels (−0.1%), illness attitudes, and perceived treatment effectiveness, compared to controls. At 12 months, only illness attitudes and self-monitoring showed benefit [27]. | At 6 and 12 months, glycaemic control had improved in the diet (−0.28%) and diet/activity groups (−0.33%), but worsened in the control group [29] | At 12 months, compared with the control group, HbA1c improved by 0.31% in the intervention group, and the improvement was significantly greater for those with a baseline HbA1c > 7% [30]. | Not applicable |
At 12 months, the control group saw an improvement in their understanding, expectation of disease continuation, and concern of their illness; while the intervention groups increased their understanding, became less concerned, felt more in control of their illness, were more satisfied with their diabetes treatment, and had higher self-reported health scores [30]. | At 12 months, the intervention group continued to report high levels of satisfaction with their treatment [34] | |||
At 36 months, there was a statistically significant reduction of HbA1c by 0.24% attributable to the intervention [36]. |
Results
Is the research question clear? | Perspective of author clear? | Perspective influenced the study design? | Is the study design appropriate? | Is the context adequately described? | Sample adequate to explore range of subjects/ settings? | Sample drawn from appropriate population? | Data collection adequately described | Data collection rigorously conducted? | Data analysis rigorously conducted? | Findings substantiated/limitations considered? | Claims to generalisability follow from data? | Ethical issues addressed? | |
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Cooper 2003 [25] | Y | Y | Y | Y | N | Y | Y | Y | Y | Y | Y | Y | Y |
Cooper 2003 [26] | Y | Y | Y | Y | N | Y | Y | Y | Y | Y | CNT | Y | Y |
Malpass 2009 [28] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
Gambling 2010 [31] | Y | Y | Y | Y | N | CNT | Y | Y | Y | Y | Y | Y | Y |
Gambling 2010 [32] | Y | Y | Y | Y | Y | Y | Y | Y | CNT | CNT | CNT | Y | Y |
Long 2011 [33] | Y | Y | Y | Y | C | CNT | Y | Y | Y | CNT | Y | Y | N |
Lawton 2004 [38] | CNT | Y | CNT | Y | Y | Y | Y | Y | Y | Y | CNT | CNT | CNT |
Lawton 2005 [39] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | Y |
Lawton 2005 [40] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | Y |
Parry 2006 [41] | CNT | Y | Y | Y | Y | Y | Y | Y | Y | Y | CNT | Y | Y |
Peel 2007 [42] | Y | CNT | CNT | Y | Y | Y | Y | Y | Y | Y | N | Y | Y |
Lawton 2008 [43] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | Y |
Lawton 2008 [44] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | CNT | Y | Y |
Lawton 2009 [45] | Y | CNT | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
Peel 2010 [11] | Y | CNT | CNT | Y | Y | Y | Y | Y | Y | CNT | Y | N | Y |
Third order construct | Second order constructs | Summary definition of the second order construct(s) | Papers that include the second order constructs |
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Patient as stakeholder | Building a picture | Patients respond better to advice that is tailored to their needs –but staff do not always do this. | [25; 28; 31; 38; 39] |
Personalised advice | |||
Appropriateness | |||
Meaning/Understanding | |||
Sharing and finding common ground | Patients feel ownership when their views and experiences are valued - but staff attitudes can undermine this. | [25; 26; 32; 38; 39] | |
Ownership | |||
Resource allocation | Patients value sustainable support and information provision - but this is resource intensive | [27; 28; 34; 37; 48; 51] | |
Resource use | |||
Timeliness | Timeliness | Patients benefit from having gaps in their knowledge addressed at their own pace (e.g. if they can ask fundamental questions beyond the initial assessment) – without these opportunities lay interpretations develop. | [25; 31; 35; 42] |
Access | |||
Phased approach | |||
Contextual knowing | |||
Consciousness raising | Patients value having information and support that matches their current perspective (e.g. if/when they are ready to understand their responsibility) – otherwise patients can disengage with service provision and/or self-management. | ||
Aligning patients’ needs | |||
Responsive advice | |||
Implementing a sustainable plan | Patients are motivated to change their behaviour, when practices are perceived as improving their quality of life –but suggestions from staff that are perceived as impairing quality of life can be perceived of as out of touch with reality | [11; 26; 28; 32; 45] | |
Self-management behaviours | |||
Empowerment | Empowerment | With understanding, some patients are able to develop a flexible regimen (e.g. titrate exercise to treats and cheats) – but without ongoing support some do not develop appropriate causal models. | [25; 26; 28; 35; 36; 37; 41; 42; 45] |
Down to me/Up to them | |||
Sustainability | Flexible regimens can enhance both control of blood glucose and quality of life – but without tailored/ ongoing education that goes beyond ‘learning by rote’ many patients find this difficult to achieve. | [28; 32; 34; 35; 36; 43; 44; 45] | |
Commitment | |||
Accounts as resources | |||
Forgetfulness |
Patient as stakeholder
One participant described the course as an ‘eye-opener’, whilst another said, ‘I’ve learnt more in the first hour here than I’ve learnt in nearly 5 years’. The course provided participants with the details of managing their disease within the context of their everyday lives, with frequent references to learning about ‘individual’ and ‘small things’ [Author quotes, [25]: 199]
‘Other things we discussed were regular food intake. I felt that she really wanted me to have my breakfast at 8, lunch at 12, tea at 4. But I explained that I can not do that. Even when you are getting older, you still have your own way of doing things. We had a discussion about the gap. I would have high readings at lunchtime and she wanted to know the cause. It was probably because I was trying to comply with her regulations but I was not getting out of bed until late, finishing my breakfast 9:30 or 9:45 and then having dinner at 1. So, we decided not to do it like that.’ [Participant quote, [32]: 224]
‘fifteen nurse or dietician visits of twenty minutes each over a twelve month period …seeing the same nurse or dietician throughout the trial.’ [Author quote, [28]: 259].
‘Mary, for example, gave the very strong impression in all of her interviews that there was little, if anything, about the health services with which she had had contact that had indicated to her that she had a potentially serious disease…Particularly striking in her interviews, however, is the assumptions she had made about why all of her care had remained in general practice. Mary, like most other patients who took part in the study, perceived hospitals as places where “you really get looked after” (Ellen) because they are frequented by diabetes consultants (i.e. specialists) who provide “the ultimate knowledge” (Andy). Accordingly, not receiving a hospital referral and/or having to wait for what was perceived as a long time for an appointment to come through were commonly interpreted by patients as indicating that they could not have a potentially serious disease.’ [Author quote, [39]: 1428–9]
Timeliness of support
‘Because I am conscious of the fact that I have to give those figures to somebody and it has been explained to me although I do not dwell on it, the implications if I do not control my levels the fact is I am susceptible to strokes, etc. The underlying factors of diabetes, I do not like to think about it but I have been made aware through calls and general conversation… I really, really love chocolate. I could eat four bars in the morning, and I am not saying I do not touch it but, I am more conscious of the damage.’ [Respondent quote, [32]: 224].
‘I don’t think I would be here if I had carried on the way I was…. Within 12 months, I was down to low numbers and now, I am in the 7 s. I have cut the drinking down by 70%… The information, changing over time, has improved me and I think it is invaluable. The call centre has met all my expectations even gone above them…’ [Participant quote, [33]: 277, Reviewer emphasis]
‘It takes that long to get an appointment with the GP you feel silly going in and saying er ‘Should I reduce my Metformin?’ and he’ll say ‘Nope’.’‘You go to your GP and you’re aware all the time that you’ve got five minutes to get this over and get out, and that’s at the back of your mind. You know, and I’m sitting there thinking ‘I’ve no got to bother her today with all these questions’…I’m thinking ‘oh well some poor soul behind me could have cancer or whatever’, you know.’ [Respondent quotes, [40]: 1248–9]
‘As I say as time goes on you get more and more used to it and you get more and more able to deal with it yourself. But initially it really is, erm certainly was for me, a real – I was in shock. And inevitably that asks…begs many questions that you want to ask and you’ve got to kind of put in a request to see y’know, well how, wait a minute, a request to see somebody, no, hang on, why can’t I just- why can’t I just have an answer to my question, simple little thing, that’ll put my mind at rest. [Respondent quote, [40]: 1249]
Eric: Erm I think I know enough erm but erm I don’t feel that y’know at the moment I-I don’t need, er,don’t want others to talk to me about diabetes. I think that might suggest that I’m becoming obsessional about the damned thing and I-I don’t know if I want … if you’re sort of searching out people or organisations that are talking about diabetes all the time, you sort of become a diabetic person and erm well you’re somebody else then.Jennifer: No, I read quite a bit about it y’know on the leaflets and that. And sometimes I often think there’s a book that they advertise in all the newspapers and I think “I’m going to send away for that” but sometimes I think you can know too much. So I’ve never done it.(I: What do you mean like in terms of knowing too much? Like because it might worry you more?)Jennifer: Yeah, yes. That’s exactly what I mean.[Respondent quotes. [40]: 1431]
‘Four checks a week, I do. But I write it down, and that’s as far as it goes’ [Participant quote, [42]: 495]
‘Well they’ll ask, y’know, what exercise you get … but they haven’t said “Oh I think you should be walking twice as far” no, nothing like that.’ [Participant quote, 11:572]
Empowerment
‘I’ve learnt about other people’s ideas, other people’s problems and you find that you are not on your own. You can learn how they are overcoming the problems.’ [Participant quotes, [26]: 202].
‘I am able to bend more now. I no longer find it [diabetes] a nuisance.’ [Participant quotes, [26]: 202].
‘For example, Wayne (DPAI) tried hard to follow dietary recommendations but enjoyed drinking alcohol and eating out. Both were key to his friendship and relationship building. To counterbalance the effects of these two behaviours, Wayne would “work a bit harder in the gym the next day”.’ [Author quote, [26]: 260]
‘I always feel better when I come back (from the gym), I always feel I’ve got more energy . . . when you’re exercising you’re saying ‘I’m doing all this, I ought to cut back a bit’ (laughs).’‘Having gone, exercised and come back, you feel really rejuvenated, and I think it spurs you on to keep motivated.’ [Participant quotes, [28]: 260]
‘He seems to have found the calls somewhat irritating: they always ask me the same question, ‘are you eating say this, this? ‘ It’s always the same. But, he remarked, if I’d had diabetes for a year I could have understood it but this is fifteen years, well, three years of this now and I know what they are going to say. He feels that he has his diabetes under control… He has not really changed the way he eats, except in relation to the amount of sugar…’ [Author quotes, [33]: 257]
‘By his third interview, Callum had “compared notes” with work colleague with T2DM who had recently moved on to insulin, and “seemed to control things a lot better”. By virtue of being able to titrate her insulin doses, this colleague appeared to have the freedom to eat and drink what she wanted, a freedom which Callum professed to desire. At this point, Callum stopped talking about being able to control his own diabetes with tablets and diet, suggesting that “sooner or later, it’s going to become an insulin issue”. He also ceased to blame any “spikes” recorded through SMBG on his continued snacking. Instead, he attributed them to “the tablets no longer working”, and used this to justify bringing forward his appointment with his consultant and negotiating a move to insulin: “I eventually convinced them I was ready for it”’ [Author quote, [43]: 53].
Summary
‘I feel better certainly. I am not getting infections […] Before, I used to get thrush and infection after infection because my blood sugars were out of control. I take more care in things like having my feet done. I do not know, I just feel healthy […] I am sure that I will continue to follow the advice.’ [Participant quote at 3 years; 32: 224]
‘I walk out and into the pigeon loft at the back door, over to the shop for my cigarette papers’ [Participant quote at 4 years; 11: 573]