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    University of Edinburgh
  • I am Professor (of Health and Social Science) based in the Medical School at Edinburgh University. Since moving to Ed... moreedit
Background Insulin is generally administered to people with type 1 diabetes mellitus (T1DM) using multiple daily injections (MDIs), but can also be delivered using infusion pumps. In the UK, pumps are recommended for patients with the... more
Background

Insulin is generally administered to people with type 1 diabetes mellitus (T1DM) using multiple daily injections (MDIs), but can also be delivered using infusion pumps. In the UK, pumps are recommended for patients with the greatest need and adult use is less than in comparable countries. Previous trials have been small, of short duration and have failed to control for training in insulin adjustment.
Objective

To assess the clinical effectiveness and cost-effectiveness of pump therapy compared with MDI for adults with T1DM, with both groups receiving equivalent structured training in flexible insulin therapy.
Design

Pragmatic, multicentre, open-label, parallel-group cluster randomised controlled trial, including economic and psychosocial evaluations. After participants were assigned a group training course, courses were randomly allocated in pairs to either pump or MDI.
Setting

Eight secondary care diabetes centres in the UK.
Participants

Adults with T1DM for > 12 months, willing to undertake intensive insulin therapy, with no preference for pump or MDI, or a clinical indication for pumps.
Interventions

Pump or MDI structured training in flexible insulin therapy, followed up for 2 years. MDI participants used insulin analogues. Pump participants used a Medtronic Paradigm® VeoTM (Medtronic, Watford, UK) with insulin aspart (NovoRapid, Novo Nordisk, Gatwick, UK).
Main outcome measures

Primary outcome – change in glycated haemoglobin (HbA1c) at 2 years in participants whose baseline HbA1c was ≥ 7.5% (58 mmol/mol). Key secondary outcome – proportion of participants with HbA1c ≤ 7.5% at 2 years. Other outcomes at 6, 12 and 24 months – moderate and severe hypoglycaemia; insulin dose; body weight; proteinuria; diabetic ketoacidosis; quality of life (QoL); fear of hypoglycaemia; treatment satisfaction; emotional well-being; qualitative interviews with participants and staff (2 weeks), and participants (6 months); and ICERs in trial and modelled estimates of cost-effectiveness.
Results

We randomised 46 courses comprising 317 participants: 267 attended a Dose Adjustment For Normal Eating course (132 pump; 135 MDI); 260 were included in the intention-to-treat analysis, of which 235 (119 pump; 116 MDI) had baseline HbA1c of ≥ 7.5%. HbA1c and severe hypoglycaemia improved in both groups. The drop in HbA1c% at 2 years was 0.85 on pump and 0.42 on MDI. The mean difference (MD) in HbA1c change at 2 years, at which the baseline HbA1c was ≥ 7.5%, was –0.24% [95% confidence interval (CI) –0.53% to 0.05%] in favour of the pump (p = 0.098). The per-protocol analysis showed a MD in change of –0.36% (95% CI –0.64% to –0.07%) favouring pumps (p = 0.015). Pumps were not cost-effective in the base case and all of the sensitivity analyses. The pump group had greater improvement in diabetes-specific QoL diet restrictions, daily hassle plus treatment satisfaction, statistically significant at 12 and 24 months and supported by qualitative interviews.
Limitation

Blinding of pump therapy was not possible, although an objective primary outcome was used.
Conclusion

Adding pump therapy to structured training in flexible insulin therapy did not significantly enhance glycaemic control or psychosocial outcomes in adults with T1DM.
Research priority

To understand why few patients achieve a HbA1c of < 7.5%, particularly as glycaemic control is worse in the UK than in other European countries.
Trial registration

Current Controlled Trials ISRCTN61215213.
Funding

This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 20. See the NIHR Journals Library website for further project information.
Research Interests:
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OBJECTIVE: To explore patients&#x27; interpretations of their DNA results for familial hypercholesterolemia (FH). METHODS: In-depth interviews were conducted with patients from two lipid clinics in Scotland, who were offered genetic... more
OBJECTIVE: To explore patients&#x27; interpretations of their DNA results for familial hypercholesterolemia (FH). METHODS: In-depth interviews were conducted with patients from two lipid clinics in Scotland, who were offered genetic testing as part of a nationwide cascade screening service. RESULTS: Patients were receptive to taking part in genetic screening and most expected a positive result. Receiving a molecular diagnosis of FH could provide reassurance to patients that diet and lifestyle factors were not the primary causes of their condition. Patients who received inconclusive results tended to interpret this as meaning that their high cholesterol was not genetic, which could induce feelings of uncertainty and self-blame. With the exception of newly diagnosed patients, for whom a positive result could provide a useful rationale for initiating statins, most perceived DNA screening to be of little relevance to their own medication use or their own approaches to lifestyle manageme...
Aims  To explore Pakistani and Indian patients’ experiences of, and views about, diabetes services in order to inform the development of culturally sensitive services.Design  Qualitative, interview study involving 23 Pakistani and nine... more
Aims  To explore Pakistani and Indian patients’ experiences of, and views about, diabetes services in order to inform the development of culturally sensitive services.Design  Qualitative, interview study involving 23 Pakistani and nine Indian patients with Type 2 diabetes recruited from general practices and the local community in Edinburgh, Scotland. Data collection and analysis occurred concurrently and recruitment continued until no new themes emerged from the interviews.Results  Respondents expressed gratitude for the availability of free diabetes services in Britain, as they were used to having to pay to access health care on the Indian subcontinent. Most looked to services for the prompt detection and treatment of complications, rather than the provision of advice about managing their condition. As respondents attached importance to receiving physical examinations, they could be disappointed when these were not offered by health-care professionals. They disliked relying on interpreters and identified a need for bilingual professionals with whom they could discuss their diabetes care directly.Conclusions  Gratitude for free services in Britain may instil a sense of indebtedness which makes it difficult for Pakistanis and Indians to be critical of their diabetes care. Health-care professionals may need to describe their roles carefully, and explain how different diabetes services fit together, to avoid Pakistani and Indian patients perceiving treatment as unsatisfactory. Whilst linkworker schemes may meet patients’ need to receive culturally sensitive information in their first language, work is needed to assess their effectiveness and sustainability.
We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed... more
We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed subtle, but important, differences in the ways in which these respondent groups attributed responsibility and blame for developing the disease. Whereas Pakistani and Indian respondents tended to externalise responsibility, highlighting their life circumstances in general and/or their experiences of migrating to Britain in accounting for their diabetes (or the behaviours they saw as giving rise to it), white respondents, by contrast, tended to emphasise the role of their own lifestyle ‘choices’ and ‘personal failings’. In seeking to understand these differences, we argue for a conceptual and analytical approach which embraces both micro- (i.e. everyday) and macro- (i.e. cultural) contextual factors and experiences. In so doing, we provide a critique of social scientific studies of lay accounts/understandings of health and illness. We suggest that greater attention needs to be paid to the research encounter (that is, to who is looking at whom and in what circumstances) to understand the different kinds of contexts researchers have highlighted in presenting and interpreting their data.
Familial DNA cascade screening for familial hypercholesterolemia (FH) has recently been introduced in Scotland. This study investigated index patients&#x27; experiences of DNA testing and mediating cascade screening. Thirty-eight patients... more
Familial DNA cascade screening for familial hypercholesterolemia (FH) has recently been introduced in Scotland. This study investigated index patients&#x27; experiences of DNA testing and mediating cascade screening. Thirty-eight patients with a clinical diagnosis of definite or possible FH who had undergone DNA testing in the lipid clinic took part in semi-structured qualitative interviews. All patients were positive about DNA screening being undertaken by familiar and trusted clinicians within the lipid clinic. Most patients had already cascaded close relatives for serum cholesterol testing following their attendance at the lipid clinic. Identified mutation carriers who had attended the genetics clinic (n = 15) for a cascading appointment described finding this consultation helpful because it identified other at-risk family members and provided them with tailored information for their relatives. Participants who expressed a preference said they favoured indirect (patient-mediated)...
All trials use protocols to standardize practice within and between trial centres and to enable replication of an experiment across space and time. However, while &#x27;centre effects&#x27; have been noted in the literature, the processes... more
All trials use protocols to standardize practice within and between trial centres and to enable replication of an experiment across space and time. However, while &#x27;centre effects&#x27; have been noted in the literature, the processes and mechanisms by which trial staff convert a protocol into practice, and create &#x27;evidence&#x27;, is a relatively understudied phenomenon. We undertook a qualitative investigation of a multi-centre, UK-based, insulin trial, where differences were found between participating centres in their attainment of the trial&#x27;s primary clinical endpoint (HbA(1c)), a measure of patients&#x27; average blood glucose control. In-depth interviews were conducted with 12 research nurses and nine clinicians recruited from 11 centres in 2009, and explored their views about trial participation and experiences of trial delivery from inception to closeout. Staff accounts highlighted mixed agendas and/or ambivalent views about involvement in pharmaceutically fund...
... ont avoué franchement détester leur corps étaient Nick et Rebecca, qui avaient les IMC les plus élevés de l&amp;#x27;échantillon, et Lorna qui avait ... La moitié des adolescents que l&amp;#x27;IMC identifiait comme corpulents ou... more
... ont avoué franchement détester leur corps étaient Nick et Rebecca, qui avaient les IMC les plus élevés de l&amp;#x27;échantillon, et Lorna qui avait ... La moitié des adolescents que l&amp;#x27;IMC identifiait comme corpulents ou obèses ont rapporté un sentiment de frustration parce que leur appétit ...
ABSTRACT
To investigate the knowledge of alcohol and carbohydrate content of commonly consumed alcoholic drinks among young adults with Type 1 diabetes and to explore alcohol consumption while identifying diabetes self-management strategies used... more
To investigate the knowledge of alcohol and carbohydrate content of commonly consumed alcoholic drinks among young adults with Type 1 diabetes and to explore alcohol consumption while identifying diabetes self-management strategies used to minimize alcohol-associated risk. We conducted an open-access, multiple-choice web survey to investigate knowledge of alcohol and carbohydrate content of typical alcoholic drinks using images. Respondents to the survey also recorded their current alcohol consumption and diabetes self-management strategies when drinking. A total of 547 people aged 18-30 years responded to the survey (341 women; 192 men; mean (sd) age 24.5 (3.7) years), of whom 365 (66.7%) drank alcohol. In all, 84 (32.9%) women and 31 (22.6%) men scored higher than the cut-off score for increased-risk drinking. Knowledge accuracy of alcohol units was poor: only 7.3% (n = 40) correctly identified the alcohol content of six or more out of 10 drinks. Knowledge of carbohydrate content ...
The United Kingdom Prospective Diabetes Study (UKPDS) is one of the longest and largest clinical trials ever conducted. It explored the effects of intensive blood glucose and blood pressure control on the development of complications in... more
The United Kingdom Prospective Diabetes Study (UKPDS) is one of the longest and largest clinical trials ever conducted. It explored the effects of intensive blood glucose and blood pressure control on the development of complications in patients with type 2 diabetes. Patients took part in this trial for up to 20 years and the drop-out rate was extremely low. The aim of this discussion paper is to explore patients&#39; motivations for joining the UKPDS and for remaining in the trial, and to examine the implications of findings for good practice before, during, and after clinical trials. A qualitative, exploratory study was undertaken, involving former UKPDS patients (n = 10) at Northampton General Hospital, England. In-depth, semi-structured interviews were undertaken and the data analysed using grounded theory approaches. The results showed that patients were motivated to join the UKPDS because they believed this would give them the best clinical care and reduce the threat of the di...
to explore the factors that influence breast-feeding practices in obese women who had either stopped breast-feeding or were no longer exclusively breast-feeding 6-10 weeks following the birth of their babies, despite an original intention... more
to explore the factors that influence breast-feeding practices in obese women who had either stopped breast-feeding or were no longer exclusively breast-feeding 6-10 weeks following the birth of their babies, despite an original intention to do so for 16 weeks or longer. Specifically (i) to identify the barriers to successful breast-feeding and reasons for introducing formula and/or stopping breast-feeding, and (ii) to explore the women׳s views and experiences of current breast-feeding support services. descriptive, qualitative study comprising semi-structured face-to-face interviews. Interviews were audio recorded and transcribed. The data were analysed using thematic analysis. participants recruited from one large maternity unit in Scotland and interviewed in their homes. 28 obese women at 6-10 weeks following birth. three major themes emerged from the data analysis: the impact of birth complications, a lack of privacy, and a low uptake of specialist breast-feeding support. Impact of birth complications: 19 of 28 women had given birth by caesarean section and some felt this led to feeling &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;out of it&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; post-operatively, a delay in establishing skin-to-skin contact, and in establishing breast-feeding. Lack of privacy; several women described reluctance to breast feed in front of others, difficulties in achieving privacy, in hospital, at home and in public. Low uptake of postnatal breast-feeding support; despite experiencing problems such as physical difficulties during breast-feeding or a perception of low milk supply, breast-feeding support services were underused by this sample of women. A small number of the women in this study used breast-feeding clinics and reported finding these useful. A further small number felt they benefitted from the support of a friend who was successfully breast-feeding. midwives should be mindful of the presence of additional factors alongside maternal obesity, such as caesarean delivery, physical difficulties when breast-feeding, poor body image, and lack of confidence about sufficient milk supply. Scope for innovation within hospital policies with regard to both the facilitation of early skin-to-skin contact and privacy in postnatal accommodation could be explored in future research. Women should be provided with information about the provision and specific purpose of breast-feeding support groups and services and encouraged to access these services when appropriate. Future research could assess the usefulness of sustained breast-feeding support by health professionals, as well as partner involvement and formal peer support for this group of women. The education and training needs of health professionals in terms of supporting this group of women to breast feed may also usefully be explored.
To compare, in a randomized controlled non-inferiority trial, the outcomes of the traditional format for Dose Adjustment for Normal Eating structured education courses; that is, one delivered over 5 consecutive days (1-week course) with a... more
To compare, in a randomized controlled non-inferiority trial, the outcomes of the traditional format for Dose Adjustment for Normal Eating structured education courses; that is, one delivered over 5 consecutive days (1-week course) with a variant of this format delivered 1 day a week for 5 consecutive weeks (5-week course). Adults with Type 1 diabetes, from seven UK Dose Adjustment For Normal Eating training centres, were individually randomized, stratified by centre, to receive either a 1-week or 5-week course. A qualitative study was embedded within the trial to explore patients&#39; experiences. In total, 213 patients were randomized and 160 completed the study procedures. In the per-protocol analysis, the difference in HbA1c levels (95% CI) between the arms at 6 months was 0.4 mmol/mol (-2.4, 3.1) or 0.03% (-0.22, 0.28) and -0.9 mmol/mol (-3.9, 2.2) or -0.08% (-0.36, 0.20) at 12 months. All confidence limits were within the non-inferiority margin of ± 5.5 mmol/mol (0.5%) for HbA...
ABSTRACT Drawing on two qualitative studies which looked at diet, weight and health from a social class perspective, we use Bourdieu&amp;#39;s theory of habitus to help explain the different food and eating practices undertaken by... more
ABSTRACT Drawing on two qualitative studies which looked at diet, weight and health from a social class perspective, we use Bourdieu&amp;#39;s theory of habitus to help explain the different food and eating practices undertaken by families with young teenagers. Whilst the families displayed considerable reflexivity when making decisions about what to eat on a daily basis, the analysis highlighted that everyday behaviours are still bounded by distinctions of taste, according to social position. The paper includes an examination of the relationships between different forms of capital and whether form or functionality is prioritised within families. We show the importance of temporal frameworks when interpreting classed food and eating practices.
As most young teenagers grow up in families, parents might be well situated to facilitate and support their weight management and thereby prevent or manage obesity prior to adulthood. This paper explores... more
As most young teenagers grow up in families, parents might be well situated to facilitate and support their weight management and thereby prevent or manage obesity prior to adulthood. This paper explores parents&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; perceptions of, and views about, their teenage children&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s weight and the factors that influence parents&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; weight management strategies. We conducted two qualitative studies in Scotland, UK, involving in-depth interviews with the parents of overweight/obese and &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;normal&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; weight 13-15 year olds (n = 69). Parents&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; concerns about their own weight provided useful context for understanding their attitudes or actions with regards to their teenage child. Some parents described their teenager&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s weight as being of concern to them, although puberty often introduced confusion about a child&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s weight status. Genetic explanations were very often put forward as a way of making sense of teenage weight or body size. Frustration about advising teenagers about weight management was expressed, and some parents worried about giving their growing child a &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;problem&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; if they directly raised concerns about weight with them. Parents&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; views about their own weight as well as social and moral norms about labelling a teenager as overweight or as needing help with their weight could usefully inform patient-centred service development. Parent/teenage partnerships and supporting parents to create a healthy home in which teenagers can make healthier choices are suggestions for intervention development. The study highlights the importance of taking parents&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; perceptions into account when developing family-based interventions to address teenage overweight and obesity.
Familial DNA cascade screening for familial hypercholesterolemia (FH) has recently been introduced in Scotland. This study investigated index patients&#x27; experiences of DNA testing and mediating cascade screening. Thirty-eight patients... more
Familial DNA cascade screening for familial hypercholesterolemia (FH) has recently been introduced in Scotland. This study investigated index patients&#x27; experiences of DNA testing and mediating cascade screening. Thirty-eight patients with a clinical diagnosis of definite or possible FH who had undergone DNA testing in the lipid clinic took part in semi-structured qualitative interviews. All patients were positive about DNA screening being undertaken by familiar and trusted clinicians within the lipid clinic. Most patients had already cascaded close relatives for serum cholesterol testing following their attendance at the lipid clinic. Identified mutation carriers who had attended the genetics clinic (n = 15) for a cascading appointment described finding this consultation helpful because it identified other at-risk family members and provided them with tailored information for their relatives. Participants who expressed a preference said they favoured indirect (patient-mediated)...
"Objective To examine patients perceptions and experiences over time of the devolvement of diabetes care ⁄ reviews from secondary to primary health-care settings. Design Repeat in-depth interviews with 20 patients over 4 years.... more
"Objective To examine patients perceptions and experiences over
time of the devolvement of diabetes care ⁄ reviews from secondary to primary health-care settings.
Design Repeat in-depth interviews with 20 patients over 4 years.
Participants and setting Twenty type 2 diabetes patients recruited from primary- and secondary-care settings across Lothian, Scotland.
Results Patients views about their current diabetes care were informed by their previous service contact. The devolvement of diabetes care ⁄ reviews to general practice was presented as a mixed blessing. Patients gained reassurance from their perception that receiving practice-based care ⁄ reviews signified that their diabetes was well-controlled. However, they also expressed resentment that, by achieving good control, they received what they saw as inferior care and ⁄ or less-frequent reviews to others with poorer control. While patients tended to regard GPs as having adequate expertise to conduct their practice-based reviews, they were more ambivalent about nurses taking on this role. Opportunities to receive holistic care in general practice were not always realized due to patients seeing health-care professionals for diabetes management to whom they would not normally present for other health issues.
Conclusions It is important to educate patients about their care pathways, and to reassure them that frequency of reviews depends more on clinical need than location of care and that similar care guidelines are followed in hospital clinics and general practice. A patients history of service contact may need to be taken into account in future studies of service satisfaction."
""Objective: Many patients with type 1 diabetes struggle to self-manage this chronic disease, often because they have a poor knowledge and understanding of the condition. However, little attention has been paid to examining the reasons... more
""Objective: Many patients with type 1 diabetes struggle to self-manage this chronic disease, often because they have a poor knowledge and understanding of the condition. However, little attention has been paid to examining the reasons for this poor knowledge/understanding. To inform future educational interventions, we explored patients’ accounts of the education and information they had received since diagnosis, and the reasons behind gaps in their diabetes knowledge.
Methods: Semi-structured interviews were conducted with thirty type 1 diabetes patients enrolled on a structured education programme in the UK. Data were analysed using an inductive, thematic approach.
Results: Patients’ accounts illustrated a number of knowledge deficits which were influenced by various lifecourse events. Reasons for deficits included: diagnosis at a young age and assumption of decision-making responsibility by parents; lack of engagement with information when feeling well; transitions in care; inconsistency in information provision; and, lack of awareness that knowledge was poor or incomplete.
Conclusion: Patients’ knowledge deficits can arise for different reasons, at different points in the lifecourse, and may change over time.
Practice implications: The delivery of individualised education should take account of the origins of patients’ knowledge gaps and be provided on a regular and on-going basis.""
Aims We explored people's reasons for, and experiences of, using bolus advisors to determine insulin doses; and, their likes/dislikes of this technology. Subjects and methods 42 people with type 1 diabetes who had received instruction in... more
Aims
We explored people's reasons for, and experiences of, using bolus advisors to determine insulin doses; and, their likes/dislikes of this technology.

Subjects and methods
42 people with type 1 diabetes who had received instruction in use of bolus advisors during a structured education course were interviewed post-course and 6 months later. Data were analysed thematically.

Results
Participants who considered themselves to have poor mathematical skills highlighted a gratitude for, and heavy reliance on, advisors. Others liked and chose to use advisors because they saved time and effort calculating doses and/or had a data storage facility. Follow-up interviews highlighted that, by virtue of no longer calculating their doses, participants could become deskilled and increasingly dependent on advisors. Some forgot what their mealtime ratios were; others reported a misperception that, because they were pre-programmed during courses, these parameters never needed changing. Use of data storage facilities could hinder effective review of blood glucose data and some participants reported an adverse impact on glycaemic control.

Discussion
While participants liked and perceived benefits to using advisors, there may be unintended consequences to giving people access to this technology. To promote effective use, on-going input and education from trained health professionals may be necessary.

Keywords
    Automated bolus advisor; Type 1 diabetes; Patient experience; Qualitative methods; Technology
Research Interests:
We explored the role of faith and religious identities in shaping end of life experiences in South Asian Muslims and Sikhs with life-limiting illnesses.Secondary analysis of data from a longitudinal, multi-perspective qualitative study of... more
We explored the role of faith and religious identities in shaping end of life experiences in South Asian Muslims and Sikhs with life-limiting illnesses.Secondary analysis of data from a longitudinal, multi-perspective qualitative study of the experience of life-limiting illness and access to palliative care services among South Asian Sikhs and Muslims in Scotland. Up to three semi-structured interviews were conducted with 25 participants, 15 family members and 20 health care professionals over a period of 18 months. Analysis was informed by Mattingly's theory on hope.Hope emerged as a central construct in the accounts of illness constructed by the participants as they struggled to make sense of and uphold a meaningful life. Clinical encounters and, for some, religious beliefs served as sources of hope for participants. Hope unfolded as an active process that enabled them to live with the personal and in particular the social ramifications of their illness. Changing images of hope were formulated and reflected as illness progressed or treatments failed. These ranged from hoping for cure, prolonged life, the regaining of lost capabilities needed to fulfil social roles, or at times death when suffering and the consequences for the family became too hard to bear.For those suffering from a life-limiting illness, sustaining hope is a complex challenge. The social character of hope is evident as it focuses on envisioning a life that is worth living, not only for oneself, but most importantly for social relations. Continuity in care at the end of life and a holistic approach is important in order to enable patients to articulate complex and changing notions of hope that at times are silenced within families, and for patients to feel confident in discussing the possible role of religious beliefs in shaping personal notions of hope.
Background Parents of non-adolescent children with type 1 diabetes are responsible for most of their child’s diabetes management tasks. Consultations are used to provide diabetes education, review clinical progress and promote diabetes... more
Background
Parents of non-adolescent children with type 1 diabetes are responsible for most of their child’s diabetes management tasks. Consultations are used to provide diabetes education, review clinical progress and promote diabetes management tasks. This study explored parents’ experiences of, and views about, their child’s diabetes consultations. The objective was to identify ways in which consultations could be improved to aid communication, understanding and knowledge retention.

Methods
In-depth interviews with 54 parents of children (aged ≤12 years) with type 1 diabetes. Data were analysed using an inductive thematic approach.

Results
Parents’ accounts revealed structural and contextual factors which could hinder effective communication and knowledge acquisition during consultations. Most reported feeling anxious going into consultations and worrying about being reprimanded by health professionals if their child’s glycaemic control had not improved. As a consequence, many parents highlighted problems concentrating and assimilating information during consultations. In extreme cases, worries about being reprimanded led parents to omit or fabricate information when discussing their child’s treatment or even to their cancelling appointments. Many parents described wanting opportunities to speak to health professionals alone because young children could be distracting and/or they did not want to raise distressing issues in front of their child. Parents described the benefits of receiving clinical advice from health professionals familiar with their family circumstances and disliking attending busy clinics and seeing different health professionals on each occasion. Parents also highlighted the benefits of receiving treatment recommendations in a written form after the consultation.

Discussion and conclusions
This study has highlighted unrecognised and undocumented aspects of the consultation which may result in parents leaving uncertain about the main issues discussed and with questions unanswered and support needs unaddressed. Structural and contextual changes to consultations are recommended to improve concentration, knowledge acquisition and retention. These include: sending letters/written summaries after consultations highlighting key decisions, providing opportunities for parents to consult health professionals without their child being present, encouraging parents to ask more questions during consultations, having procedures in place to promote continuity of care and providing parents with consistent and non-contradictory advice.
Background: The perspectives and experiences of trial staff are increasingly being investigated as these can be used to improve recruitment, adherence to trial protocols and support given to future staff. We interviewed staff working on a... more
Background: The perspectives and experiences of trial staff are increasingly being investigated as these can be used to improve recruitment, adherence to trial protocols and support given to future staff. We interviewed staff working on a type 1 diabetes trial in order to aid interpretation of trial findings, inform recommendations for the rollout of the treatments investigated and provide recommendations for the conduct of future trials. However, our interviews uncovered aspects of trial work erstwhile unrecognised or underreported in the trials  literature, and it is these which form the focus of this paper.
Methods: In-depth interviews were conducted with (n = 18) staff, recruited from seven centres, who were involved in recruitment and trial delivery. Data were analysed thematically. Results: Alongside logistical and practical issues which made trial work challenging, staff often talked spontaneously and at length about how trial work had affected them emotionally.  Staff not only described the emotional stresses arising from having to meet recruitment targets and from balancing research roles with clinical responsibilities, they also discussed having to emotionally manage patients and their colleagues. The emotional aspects of trial work particularly came to the fore when staff notified patients about their treatment  allocation. On such occasions, staff described having to employ emotional strategies to pre-empt and manage potential patient disappointment and anger. Staff also described having to  manage their own emotions when patients withdrew from the trial or were not randomised to the treatment arm which, in their clinical judgment, would have been in their best interests. To help address the emotional challenges they encountered, staff highlighted a need for more practical, emotional and  specialist psychological support.
Conclusions: More attention should be paid to the emotional aspects of trial work to help ensure trial staff are adequately supported. Such support could comprise: increased training for staff to improve their own and patients’ understandings of randomization, role-play to develop techniques to manage patient anger and disappointment, sharing of good practice, formalised team support with psychological input and access to specialist psychological support to troubleshoot complex emotional and ethical issues.
National Audit Data highlight persistent sub-optimum control among increasing numbers of people living with diabetes, with severe consequences for the individual and the NHS. The aim of the present review was to introduce a new cohesive,... more
National Audit Data highlight persistent sub-optimum control among increasing numbers of people living with diabetes, with severe consequences for the individual and the NHS. The aim of the present review was to introduce a new cohesive, holistic model of care, tailored to individual needs to support optimum diabetes outcomes. This model of diabetes is necessary in order to understand the driving forces behind behaviour and their impact on diabetes management. Feelings (an emotional state or reaction) and beliefs (an acceptance that something is true or real) are fundamental behavioural drivers and influence diabetes self-management choices. Individually, these explain some of the complexities of behaviour and, collectively, they impact on personal motivation (rationale/desire to act) to achieve a specific outcome. Inevitably, they independently affect diabetes self-management and the environment in which individuals live. A model of care that proposes the encompassing of environment, intrinsic thought and therapy regimens to provide tailored, personalized healthcare should support enhanced diabetes self-management and outcomes from diagnosis. The Kaleidoscope model of care could be deliverable in routine care, incorporating each of the influences on diabetes self-management, and should benefit both individuals with diabetes and healthcare professionals.
OBJECTIVES: We explored the role of faith and religious identities in shaping end of life experiences in South Asian Muslims and Sikhs with life-limiting illnesses. DESIGN: Secondary analysis of data from a longitudinal,... more
OBJECTIVES:

We explored the role of faith and religious identities in shaping end of life experiences in South Asian Muslims and Sikhs with life-limiting illnesses.

DESIGN:

Secondary analysis of data from a longitudinal, multi-perspective qualitative study of the experience of life-limiting illness and access to palliative care services among South Asian Sikhs and Muslims in Scotland. Up to three semi-structured interviews were conducted with 25 participants, 15 family members and 20 health care professionals over a period of 18 months. Analysis was informed by Mattingly's theory on hope.

RESULTS:

Hope emerged as a central construct in the accounts of illness constructed by the participants as they struggled to make sense of and uphold a meaningful life. Clinical encounters and, for some, religious beliefs served as sources of hope for participants. Hope unfolded as an active process that enabled them to live with the personal and in particular the social ramifications of their illness. Changing images of hope were formulated and reflected as illness progressed or treatments failed. These ranged from hoping for cure, prolonged life, the regaining of lost capabilities needed to fulfil social roles, or at times death when suffering and the consequences for the family became too hard to bear.

CONCLUSIONS:

For those suffering from a life-limiting illness, sustaining hope is a complex challenge. The social character of hope is evident as it focuses on envisioning a life that is worth living, not only for oneself, but most importantly for social relations. Continuity in care at the end of life and a holistic approach is important in order to enable patients to articulate complex and changing notions of hope that at times are silenced within families, and for patients to feel confident in discussing the possible role of religious beliefs in shaping personal notions of hope.
OBJECTIVES: To explore the experiences of people who have hypoglycaemia unawareness and its impact on their everyday lives. METHODS: In-depth interviews with 38 people with Type 1 diabetes who have hypoglycaemia unawareness. Data... more
OBJECTIVES:

To explore the experiences of people who have hypoglycaemia unawareness and its impact on their everyday lives.

METHODS:

In-depth interviews with 38 people with Type 1 diabetes who have hypoglycaemia unawareness. Data analysis used an inductive, thematic approach.

RESULTS:

Participants reported imposed and self-imposed changes to their lives following onset of hypoglycaemia unawareness including: leaving employment, curtailing pastimes and spending more time at home or being supervised by others. However, some reported getting on with life by downplaying the significance and impact of their condition, which could put their health and safety at risk. Many relied on frequent self-monitoring of blood glucose and/or prompting from others to detect hypoglycaemia. Some expressed concerns about becoming a burden on family and/or responding in irrational and aggressive ways to others' suggestions to test for and treat hypoglycaemia. Participants reported responding best to composed and directive prompts from family. Health professionals mainly advised on clinical aspects, and did not enquire about the emotional and psychosocial impact of hypoglycaemia unawareness.

DISCUSSION:

Hypoglycaemia unawareness can have a profound impact on people's confidence, careers and personal relationships. Healthcare professionals should pay more attention during consultations to the emotional and social aspects of living with hypoglycaemia unawareness.
AIM: To investigate self-monitoring of blood glucose (SMBG) behaviour among non-insulin treated patients with type 2 diabetes mellitus, and to evaluate associations with glycaemic control. METHODS: Eligible patients in 23 GP... more
AIM:

To investigate self-monitoring of blood glucose (SMBG) behaviour among non-insulin treated patients with type 2 diabetes mellitus, and to evaluate associations with glycaemic control.

METHODS:

Eligible patients in 23 GP practices in Tayside, Scotland, were identified (18-75 years, no insulin treatment, SMBG reagent strips dispensed in 2009). Consenting patients were administered questionnaires addressing SMBG behaviour: these primary data were record-linked to clinical data (including HbA1c) from a validated population-based diabetes clinical information system, then anonymised.

RESULTS:

Among 629 eligible patients, 207 were interviewed and analysed. Mean SMBG reagent strips dispensed in 12 months was 268. In response to a perceived high test result, 80 (38.8%) patients took no action or simply checked later with most of them (61.3%) indicating they did not know what action to take. Of the 126 (61.2%) patients who took some action, 101 made changes to diet, 12 increased physical activity, 10 made changes to medication and 12 mad a HCP appointment. A high score on a Diabetes Knowledge Test was a statistically significant predictor of taking action (odds ratio: 2.07). However, neither taking action nor increased SMBG frequency was associated with improved glycaemic control.

CONCLUSIONS:

Responding to SMBG test results and increased testing frequency were not associated with improved glycaemic control in the short-term. There is a lack of knowledge surrounding SMBG in non-insulin treated patients.

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We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed... more
We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed subtle, but important, differences in the ways in which these respondent groups attributed responsibility and blame for developing the disease. Whereas Pakistani and Indian respondents tended to externalise responsibility, highlighting their life circumstances in general and/or their experiences of migrating to Britain in accounting for their diabetes (or the behaviours they saw as giving rise to it), white respondents, by contrast, tended to emphasise the role of their own lifestyle 'choices' and 'personal failings'. In seeking to understand these differences, we argue for a conceptual and analytical approach which embraces both micro- (i.e. everyday) and macro- (i.e. cultural) contextual factors and experiences. In so doing, we provide a critique of social scientific studies of lay accounts/understandings of health and illness. We suggest that greater attention needs to be paid to the research encounter (that is, to who is looking at whom and in what circumstances) to understand the different kinds of contexts researchers have highlighted in presenting and interpreting their data.
The growing prevalence of type 2 diabetes is placing Scottish health services under considerable strain. Consequently, diabetes services are undergoing a major process of reorganisation, including the devolvement of routine diabetes... more
The growing prevalence of type 2 diabetes is placing Scottish health services under considerable strain. Consequently, diabetes services are undergoing a major process of reorganisation, including the devolvement of routine diabetes care/diabetic review from secondary to primary healthcare settings. This qualitative study was devised to explore newly diagnosed type 2 diabetes patients’ perceptions of their disease and the health services they receive at a time when this restructuring of services is taking place. The sample comprised 40 patients resident in Lothian, Scotland, who had diverse experiences of services, some receiving GP-based care only, others having varying contact with hospital diabetes clinics. In-depth interviews were undertaken with patients, three times at six monthly intervals over 1 year, enabling their experiences to be tracked at critical junctures during the post-diagnostic period. Disease perceptions and health service delivery were found to be mutually informing and effecting. Not only did (different types of) health service delivery influence the ways in which patients thought about and self-managed their disease, over time patients’ disease perceptions also informed their expectations of, and preferences for, diabetes services. We thus argue that there is a need for a reconceptualisation within the medical social sciences to take into account the context of healthcare and the economic/policy factors that inform health service delivery when looking at patients’ disease perceptions. We also discuss the logistical and ethical challenges of drawing upon patients’ perspectives, preferences and views in the design and delivery of future health services.

Keywords: Diabetes; Lay understandings; Health service delivery; Self-management; Scotland; UK
The growing prevalence of type 2 diabetes is placing Scottish health services under considerable strain. Consequently, diabetes services are undergoing a major process of reorganisation, including the devolvement of routine diabetes... more
The growing prevalence of type 2 diabetes is placing Scottish health services under considerable strain. Consequently, diabetes services are undergoing a major process of reorganisation, including the devolvement of routine diabetes care/diabetic review from secondary to primary healthcare settings. This qualitative study was devised to explore newly diagnosed type 2 diabetes patients' perceptions of their disease and the health services they receive at a time when this restructuring of services is taking place. The sample comprised 40 patients resident in Lothian, Scotland, who had diverse experiences of services, some receiving GP-based care only, others having varying contact with hospital diabetes clinics. In-depth interviews were undertaken with patients, three times at six monthly intervals over 1 year, enabling their experiences to be tracked at critical junctures during the post-diagnostic period. Disease perceptions and health service delivery were found to be mutually informing and effecting. Not only did (different types of) health service delivery influence the ways in which patients thought about and self-managed their disease, over time patients' disease perceptions also informed their expectations of, and preferences for, diabetes services. We thus argue that there is a need for a reconceptualisation within the medical social sciences to take into account the context of healthcare and the economic/policy factors that inform health service delivery when looking at patients' disease perceptions. We also discuss the logistical and ethical challenges of drawing upon patients' perspectives, preferences and views in the design and delivery of future health services.
OBJECTIVE: Our aim was to examine how diagnosis is perceived by a sample of newly diagnosed type 2 diabetes patients. METHODS: A qualitative study was carried out in the Lothian region of Scotland using in-depth interviews of 40 newly... more
OBJECTIVE: Our aim was to examine how diagnosis is perceived by a sample of newly diagnosed type 2 diabetes patients.
METHODS: A qualitative study was carried out in the Lothian region of Scotland using in-depth interviews of 40 newly diagnosed type 2 diabetes patients recruited from 16 general practices in four Local Health Care Co-operatives and three hospital clinics. Purposive selection ensured that the sample's demographic characteristics were broadly representative of newly diagnosed type 2 diabetes patients in Lothian/Scotland.
RESULTS: Clarity, timing and authority of the diagnosis delivery were highly salient for patients. Many patients perceived their GP as unwilling to deliver/confirm the diagnosis. Patients who were not referred to hospital were unclear why a referral had not taken place. Those referred perceived confirmation of diagnosis by the consultant as a central reason. Waiting for a hospital appointment could be problematic for patients. Most wanted the diagnosis confirmed before they felt confident making lifestyle changes. Input from health services during the period prior to the hospital visit was highly valued. Waiting was taken by some asymptomatic patients to indicate that they did not have the condition. Others used a lengthy period of waiting to confirm their view that they had a 'milder' or 'less serious' form of diabetes than other patients.
CONCLUSIONS: Adequate input from practitioners is needed to ensure that diagnosis is fully exploited as a crucial period in which patients learn to adapt to their condition. Being explicit about the diagnosis at first contact may avoid the problem of patients feeling 'in limbo' or uncertain whether they have type 2 diabetes. Practitioners should convey to patients that post-diagnosis/initial care is a process, stages of this process should be clarified to avoid misunderstanding and services should be integrated during this interim period to best effect.
BACKGROUND: Self-monitoring of blood glucose is controversial in the management of type 2 diabetes. Some research suggests that self-monitoring improves glycaemic control, whereas other research is sceptical about its value for people... more
BACKGROUND: Self-monitoring of blood glucose is controversial in the management of type 2 diabetes. Some research suggests that self-monitoring improves glycaemic control, whereas other research is sceptical about its value for people with type 2 diabetes who are not on insulin. Although blood glucose meters are widely available and used by this group, patients' own views are absent from the debate. AIM: To explore the pros and cons of glucose monitoring from the patients' perspectives. DESIGN OF STUDY: Qualitative repeat-interview study. SETTING: Patients were recruited from 16 general practices and three hospital clinics within four local healthcare cooperatives in Lothian, Scotland. METHOD: Interview data from 40 patients diagnosed with type 2 diabetes within the previous 6 months were analysed using thematic analysis informed by grounded theory. We report findings from round 1 and round 2 interviews. RESULTS: Glucose monitoring can heighten patients' awareness of the impact of lifestyle; for example, dietary choices, on blood glucose levels. Glucose monitoring amplifies a sense of 'success' or 'failure' about self-management, often resulting in anxiety and self-blame if glucose readings remain consistently high. Moreover, monitoring can negatively effect patients' self-management when readings are counter-intuitive. CONCLUSION: Our analysis highlights the importance of understanding the meanings that newly diagnosed patients attach to glucose self-monitoring. To maximise the positive effects of self-monitoring, health professionals should ensure that patients understand the purpose of monitoring and should clarify with patients how readings should be interpreted.
Research about diagnosis of chronic illness indicates this is an emotional time for patients. Information provision is especially salient for diabetes management. Yet current orthodoxy suggests that too much information at the time of... more
Research about diagnosis of chronic illness indicates this is an emotional time for patients. Information provision is especially salient for diabetes management. Yet current orthodoxy suggests that too much information at the time of diagnosis is unhelpful for patients. In this study, we used in-depth interviews with 40 newly diagnosed type 2 diabetic (T2DM) patients in Scotland, to explore their emotional reactions about diagnosis, and their views about information provision at the time of diagnosis. Data were analysed using a thematic approach. Our results showed three main ‘routes’ to diagnosis: ‘suspected diabetes’ route; ‘illness’ route; and ‘routine’ route. Those within the ‘routine’ route described the most varied emotional reactions to their diagnosis. We found that most patients, irrespective of their route to diagnosis, wanted more information about diabetes management at the time of diagnosis. We suggest that practitioners would benefit from being sensitive to the route patients follow to diagnosis, and prompt, simple but detailed advice about T2DM management would be helpful for newly diagnosed patients.
Adopting and maintaining a healthy diet is pivotal to diabetic regimens. Behavioural research has focused on strategies to modify/maintain healthy behaviours; thus ‘compliance’ and ‘non- compliance’ are operationalized by researchers. In... more
Adopting and maintaining a healthy diet is pivotal to diabetic regimens. Behavioural research has focused on strategies to modify/maintain healthy behaviours; thus ‘compliance’ and ‘non- compliance’ are operationalized by researchers. In contrast, discursive psychology focuses on the actions different accounts accomplish—in this case regarding diets. Using thematic discourse analysis, we examine dietary management talk in repeat-interviews with 40 newly diagnosed type 2 diabetes patients. Women in our study tended to construct dietary practices as an individual concern, while men presented food consumption as a family matter. Participants accounted for ‘cheating’ in complex ways that aim to accomplish, for instance, a compliant identity. Discursive psychology may facilitate fluidity in our understandings of dietary management, and challenge fixed notions of ‘compliant’ and ‘non-compliant’ diabetes patients.

Keywords
compliance, diabetic regimen, diet, discourse analysis,
type 2 diabetes
Background: Physical activity is particularly important for people with type 2 diabetes, as evidence suggests that any reduction in sedentary time is good for metabolic health. Aim: To explore type 2 diabetes patients’ talk about... more
Background: Physical activity is particularly important for people with type 2 diabetes, as evidence suggests that any reduction in sedentary time is good for metabolic health.
Aim: To explore type 2 diabetes patients’ talk about implementing and sustaining physical activity.
Design of study: Longitudinal, qualitative study using repeat in-depth interviews with 20 patients over 4 years following clinical diagnosis.
Setting: Patients were recruited from 16 general practices and three hospitals across Lothian, Scotland.
Results: Discussion, and salience, of physical activity was marginal in patient accounts of their diabetes management. Patients claimed to have only received vague and non-specific guidance about physical activity from health professionals, and emphasised a perceived lack of interest and encouragement. Aside from walking, physical activities which were adopted tended to attenuate over time. Patients’ accounts revealed how walking a dog assisted this kind of activity maintenance over time. Three main themes are highlighted in the analysis: 1) incidental walking; 2) incremental physical activity gains; and 3) augmenting physical activity maintenance. The problems arising from walking without a dog (for example, lack of motivation) are also examined.
Conclusion: Asking patients about pet preferences might seem tangential to medical interactions. However, encouraging dog walking or identifying another interest that promotes a regular commitment to undertake physical activity may yield long-term health benefits.

Keywords
behaviour change; exercise; patients’ perspectives; physical activity; qualitative study; type 2 diabetes.
In this article, the authors analyze participants’ accounts of why they took part in a repeat- interview study exploring newly diagnosed patients’ perceptions of diabetes service provision in Lothian, Scotland. The study involved three... more
In this article, the authors analyze participants’ accounts of why they took part in a repeat- interview study exploring newly diagnosed patients’ perceptions of diabetes service provision in Lothian, Scotland. The study involved three semi-structured in-depth interviews with each patient (N = 40), which spanned a year. The authors provide a thematic discursive analysis of responses to the question, Can I ask you what made you decide to part in the study and why you’ve stayed involved over the past year? The main themes are (a) recruitment within health contexts (“the nurse said it would help”), (b) altruism (“if it can help somebody”), (c) qualitative research being seen as inherently innocuous (“nothing to lose”), and (d) therapeutic aspects of interviewing (“getting it off my chest”). The analysis contributes both to the qualitative literature about generic research participation and to a germinal literature exploring qualitative health research participation.

Keywords: diabetes, repeat interviews, qualitative research, research participation
Objective  To examine patients’ perceptions and experiences over time of the devolvement of diabetes care/reviews from secondary to primary health-care settings. Design  Repeat in-depth interviews with 20 patients over 4 years.... more
Objective  To examine patients’ perceptions and experiences over time of the devolvement of diabetes care/reviews from secondary to primary health-care settings.

Design  Repeat in-depth interviews with 20 patients over 4 years.

Participants and setting  Twenty type 2 diabetes patients recruited from primary- and secondary-care settings across Lothian, Scotland.

Results  Patients’ views about their current diabetes care were informed by their previous service contact. The devolvement of diabetes care/reviews to general practice was presented as a ‘mixed blessing’. Patients gained reassurance from their perception that receiving practice-based care/reviews signified that their diabetes was well-controlled. However, they also expressed resentment that, by achieving good control, they received what they saw as inferior care and/or less-frequent reviews to others with poorer control. While patients tended to regard GPs as having adequate expertise to conduct their practice-based reviews, they were more ambivalent about nurses taking on this role. Opportunities to receive holistic care in general practice were not always realized due to patients seeing health-care professionals for diabetes management to whom they would not normally present for other health issues.

Conclusions  It is important to educate patients about their care pathways, and to reassure them that frequency of reviews depends more on clinical need than location of care and that similar care guidelines are followed in hospital clinics and general practice. A patients’ history of service contact may need to be taken into account in future studies of service satisfaction.
We undertook a longitudinal qualitative study involving of 20 patients from Scotland who had type 2 diabetes. We looked at their perceptions and understandings of why they had developed diabetes and how, and why, their causation accounts... more
We undertook a longitudinal qualitative study involving of 20 patients from Scotland who had type 2 diabetes. We looked at their perceptions and understandings of why they had developed diabetes and how, and why, their causation accounts had changed or remained stable over time. Respondents, all of whom were white, were interviewed four times over a 4-year period (at baseline, 6, 12 and 48 months). Their causation accounts often shifted, sometimes subtly, sometimes radically, over the 4 years. The experiential dimensions of living with, observing, and managing their disease over time were central to understanding the continuities and changes we observed. We also highlight how, through a process of removing, adding and/or de-emphasising explanatory factors, causation accounts could be used as “resources” to justify or enable present treatment choices. We use our work to support critiques of social cognition theories, with their emphasis upon beliefs being antecedent to behaviours. We also provide reflections upon the implications of our findings for qualitative research designs and sampling strategies.
Aims  To explore newly diagnosed Type 2 diabetes patients’ views about Scottish diabetes services at a time when these services are undergoing a major reorganization. To provide recommendations to maximize opportunities brought by the... more
Aims  To explore newly diagnosed Type 2 diabetes patients’ views about Scottish diabetes services at a time when these services are undergoing a major reorganization. To provide recommendations to maximize opportunities brought by the devolvement of services from secondary to primary healthcare settings.Methods  Qualitative panel study with 40 patients newly diagnosed with Type 2 diabetes, recruited from hospital clinics and general practices in Lothian, Scotland. Patients were interviewed three times over 1 year. The study was informed by grounded theory, which involves concurrent data collection and analysis.Results  Patients were generally satisfied with diabetes services irrespective of the types of care received. Most wanted their future care/review to be based in general practice for reasons of convenience and accessibility, although they disliked it when appointments were scheduled for different days. Many said they lacked the knowledge/confidence to know how to manage their diabetes in particular situations, and needed access to healthcare professionals who could answer their questions promptly. Patients expressed a need for primary care professionals who had diabetes expertise, but who had more time and were more accessible than general practitioners. Patients who had encountered practice lead nurses for diabetes spoke particularly positively of these professionals.Conclusions  Nurses with diabetes training are particularly well placed to provide information and support to patients in primary care. Ideally, practices should run ‘one-stop’ diabetes clinics to provide structured care, with easily accessible dietetics, podiatry and retinopathy screening. Newly diagnosed patients may benefit from being made more aware of specific services provided by charitable organizations such as Diabetes UK.
Objective To explore views of patients with type 2 diabetes about self monitoring of blood glucose over time. Design Longitudinal, qualitative study. Setting Primary and secondary care settings across Lothian, Scotland. Participants 18... more
Objective To explore views of patients with type 2 diabetes about self monitoring of blood glucose over time.
Design Longitudinal, qualitative study.
Setting Primary and secondary care settings across Lothian, Scotland.
Participants 18 patients with type 2 diabetes.
Main outcome measures Results from repeat in-depth interviews with patients over four years after clinical diagnosis.
Results Analysis revealed three main themes—the role of health professionals, interpreting readings and managing high values, and the ongoing role of blood glucose self monitoring. Self monitoring decreased over time, and health professionals’ behaviour seemed crucial in this: participants interpreted doctors’ focus on levels of haemoglobin A1c, and lack of perceived interest in meter readings, as indicating that self monitoring was not worth continuing. Some participants saw readings as a proxy measure of good and bad behaviour—with women especially, chastising themselves when readings were
high. Some participants continued to find readings difficult to interpret, with uncertainty about how to respond to high readings. Reassurance and habit were key reasons for continuing. There was little indication that participants were using self monitoring to effect and maintain behaviour change.
Conclusions Clinical uncertainty about the efficacy and role of blood glucose self monitoring in patients with type 2 diabetes is mirrored in patients’ own accounts. Patients tended not to act on their self monitoring results, in part because of a lack of education about the appropriate response to readings. Health professionals should be explicit about whether and when such patients should self monitor and how they should interpret and act upon the results, especially high readings.