Group clinics for young adults living with diabetes in an ethnically diverse, socioeconomically deprived population: mixed-methods evaluation

Current practice of diabetes care and who/what it fails to reach

The research described in this report is important for people who have diabetes and for the NHS for a number of reasons. First, after the transfer (or ‘transition’) of care from paediatric to adult care, young adults (usually defined as people aged 16–25 years) frequently exhibit a deterioration in glycaemic control. Loss to follow-up is common22,23 and attendance rates are low. 24 Many young adults with diabetes report poor experiences of, and dissatisfaction with, the care that they receive and challenges navigating health-care systems. 25 High diabetes distress and poor self-care have also been widely recognised in young people with diabetes. 26 A well-conducted multicentre trial27 found that enhanced transition care, including close support from a transition co-ordinator, had only short-term benefits for young people with T1D, and there is little trial evidence for T2D care during transition and young adulthood. These issues have been recognised internationally in a consensus statement by the American Diabetes Association28 and by the NHS, which has designed service specifications to support transition and young adult care for people with diabetes. 29 As described above, diabetes outcomes are disproportionately poorer among children and young adults from ethnic minority backgrounds and living in deprivation than among those who are not. 21 These findings highlight a need to look beyond traditional models of diabetes care, currently based on one-to-one clinic appointments with health professionals, to try to improve engagement with care, quality and experiences of care, and diabetes-related outcomes.

The focus on young adults living with diabetes reflects a key point in an individual’s life course at which effective intervention has the potential to lead to major improvements in long-term health outcomes and could potentially have an impact on lifelong health behaviours and engagement with care.

Improving care design and delivery through participatory involvement

Recent quality improvement work within the NHS30 has built on accumulating patient experiences that suggest that current care models do not adequately support individuals to take control of their health or work with their care providers to achieve their desired outcomes and experiences. The concept of person-centred care is central to these quality improvement programmes and has been widely adopted by organisations designing, delivering and evaluating complex care models, such as the NHS, The Health Foundation and The King’s Fund. 30 A number of different approaches to developing person-centred care have been proposed, including collaborative care models and experience-based co-design (EBCD). 31 Person-centred approaches have been shown to engage diverse and underserved communities32 and young people,33 particularly in mental health-care settings.

Collaboration and co-design in health care are increasingly built into health services research and intervention development, with a relevant example in T1D structured education. 34 EBCD offers an approach to examine, test, review and refine the new care model it designs in an iterative evaluation process, valuably applied to health-care implementation research.

Aims

• To explore the scope, feasibility, impact and potential scalability of group clinics for young adults with diabetes.

• To contribute to NHS service redesign and improve care for people from underserved groups with long-term conditions.

Research questions

• How and to what extent might an innovative, co-designed, group clinic-based care model meet the complex health and social needs of young people with diabetes?

• Could a group approach help support diabetes self-management? If so, what can the experiences of participants, the functioning of the group and the wider context in which the new model takes place tell us about its mechanisms of action?

• What is the feasibility, acceptability, cost and impact on outcomes of introducing group clinics for their users and stakeholders? What is the organisational impact of this model to the NHS and other stakeholders?

• What would be the optimal size and study design of a cluster-randomised controlled study to evaluate the clinical benefit and cost-effectiveness of offering group clinics to young adults with diabetes? What other factors should be considered when planning such a randomised controlled trial (e.g. factors relating to patient characteristics, existing models of service delivery, acceptability and mechanisms of action of group clinics on clinical outcomes)?

Revised aims of National Diabetes Audit analyses

We had intended to perform unit-level (i.e. per clinical service) comparisons of the care delivered to all patients at our group clinic and control sites, using the NHS Digital National Diabetes Audit to provide a descriptive background and a comparison with national data. However, after data access had been granted by NHS Digital, it became apparent that complete unit-level data from our research sites were not available because the required data sets were not complete and, at one research site, could not be disaggregated at unit level from within a larger hospital trust provider. We, therefore, undertook an alternative analysis by using data collected at the individual level from our recruited research participants and comparing this with national-level data from the National Diabetes Audit (NDA). 45

Inclusion of an additional research site for group clinics

During the course of recruitment to our group clinic care model at Newham University Hospital, it became apparent that we would not meet our recruitment target because of a recent reduction in the total clinic population (owing to recent local service changes), as well as incomplete uptake. We, therefore, made a proactive decision to open a new research site at the Central Middlesex Hospital to run the group clinics. Central Middlesex serves a comparable multiethnic, deprived, urban population to Newham University Hospital. The inclusion of this new site had both advantages and disadvantages to the research process. The advantages were that we could evaluate the delivery of group clinics in an NHS setting with different staff, care processes and organisational structures, and we were able to study the group clinic model at a more advanced stage of its development following its co-design and implementation at Newham. This provided new insights and richness to the evaluation of implementation, and contributes to the generalisability of the research findings. There were fewer disadvantages: the variation in delivery of the care model made the direct comparison of quantitative data between Newham and Central Middlesex challenging, and, therefore, data from both sites have not been aggregated.

Comparative quantitative analyses

We had planned to undertake an intention-to-treat analysis, in which we would compare participants at the intervention sites who had been offered and agreed to participate in the group clinics with those who had not been offered group clinics. However, owing to the challenges of recruitment at the group clinic sites, and the variable attendance at group clinics of the recruited participants, we instead offered the group clinic to all young adults at each clinic site and compared those who did with those who did not attend (DNA). As planned, we then compared characteristics and trajectories of all participants at intervention sites with participants at control sites (intention-to-treat analysis).

Existing use of group clinics in the NHS

To investigate the existing and potential use of group clinics in diabetes management and treatment, a scoping survey was set up for interested health-care professionals in May 2017. An online questionnaire tool was disseminated to clinical networks and professionals via e-mail and social media.

Methodological approach

Our research drew on key theoretical and practical approaches to participatory research that allow researchers, practitioners and service users to learn together for the benefit of service redesign. 58,59 The group clinic interventions were co-designed using a participatory approach to ensure cultural, developmental and practical relevance; enhance recruitment and retention; and attempt to instigate system change and support sustainability. 59 Co-design focuses on improving patient and staff experiences, with equal importance being given to each perspective. Participants in co-design, whether patients, staff or other stakeholders,60 are seen as being ‘expert through experience’, and this experience is utilised in co-design to identify opportunities for improvement and adaptations to service design, focused on the functionality (usability) for patients and staff. In co-design approaches, patients and staff work alongside each other to identify problems that can be practically overcome and to develop a jointly negotiated outcome. Co-design with young people may require special facilitation skills and adaptation to be developmentally and age appropriate. The role of the facilitator is key in building trust,61 but there are also considerations around the special challenges of engaging young people to take part and in ensuring informed consent.

We used The King’s Fund Experience-based Co-design Toolkit. 31,61–63 This approach was chosen because research64 suggests that co-designed services can lead to service improvement. The EBCD process provides a template for co-designing service development, drawing on the expertise of patients and staff, with regular review and iteration. EBCD gives a detailed insight into the experiences of all participants, including both patients and staff. When EBCD is conducted, patients and staff work separately at first and are then brought together for joint work. This careful approach supports participation from patients and staff (including wider stakeholders), in prioritising aspects of existing care to build on, as well as areas for improvement and change.

We planned a co-design process that would evolve and adapt as the project developed, and would fit around availability of participants, practical constraints and hospital procedures. Previous work65 indicates that there are particular challenges of engaging young people in co-production work, especially if they are also coping with a long-term condition as well as the day-to-day challenges of education and/or work.

We made adaptations to the full EBCD process, which ordinarily includes the production of a series of films that help to share perspectives between the groups. We omitted this step because it was decided that this aspect would be too time-consuming and might be a disincentive to young adults and staff engaging with the process. Instead of filming, we relied on audio-recording and verbal feedback at meetings. These changes are consistent with reports from other users and researchers of co-design who have also streamlined these EBCD processes. 64

Phase 1

In year 1, co-design was used to develop and build the new group clinic-based model of care and involved the following:

• Group and individual sessions – group co-design sessions were formed for young people and staff/stakeholders separately, and were complemented by additional one-to-one interviews.

• Analysis of the main themes arising from the interviews.

• A joint patient and staff/stakeholder event to bring perspectives together.

• Further analysis of emerging themes.

• Follow-up interviews with additional participants as necessary.

• Feedback to participants.

Phase 2

In year 2, the second phase of co-design supported iterative development of the group clinic model, refining its design and delivery after the clinics had already been implemented for 1 year. This involved the following:

• Group sessions – further group sessions involving both patients and staff took place across both research sites.

• Individual interviews with both staff and patients at both research sites.

Continuous co-design processes

Ongoing co-design was built in alongside the implementation of the group clinics, using discussion and feedback after each session and facilitated by the clinician and researcher in residence. This supported wider participation from young adults beyond the discrete co-design sessions outlined above, allowing iterative adaptation.

Qualitative methods

Qualitative data analysis

Owing to the iterative nature of the research, the researcher in residence carried out analysis in parallel to data collection throughout the project, with emerging findings presented and discussed in team meetings and used to adapt the model of care. The analysis drew on different theoretical lenses (see Theoretical approach), such as complexity approaches in health services research47,49 and frameworks on invisible, hidden work,56,67 as well as burden of treatment and patient work theory,55 solidarity practices52 and critical perspectives on patient expertise. 53 We moved between an inductive and a deductive approach to our analysis, paying attention to emergent themes and using substantive theory as a sensitising device to drive further interrogation of the data. We also drew on the programme theory developed as part of our realist review in earlier stages of the project (see Chapter 2) and refined its different components based on further analysis of our empirical data. We continuously developed the overall narrative emerging from our analysis and iteratively added to the coding framework. A second researcher (AF), with a background in psychology and complex intervention development, was involved in later stages of the analysis of the group clinic transcripts, independently verifying the coding framework and developing consensus on emergent themes. Interim analysis was also driven by pragmatic requirements to inform implementation, as well as to ensure that no safety issues were raised by participants.

NVivo version 12 (QSR International, Warrington, UK) and Microsoft Word (Microsoft Corporation, Redmond, WA, USA) documents were used to support management and analysis of qualitative data, which included anonymised interview and group clinic transcripts, ethnographic field notes, e-mail communications and other documents. An example NVivo analysis is presented in Appendix 3.

Quantitative methods

Quantitative methods: health economics

An NHS perspective was adopted, spanning primary and secondary health-care sectors. Economic evaluation methods followed the Guide to the Methods of Technology Appraisal 2013,70 which provides guidance on how to assess the clinical effectiveness and cost-effectiveness of new and established technologies in the NHS.

Key patient and public involvement elements

The main planned elements of PPI in our research were led by our voluntary sector partner, the AYPH, in partnership with the main project delivery team and academic partners.

The overall intention of the PPI and dissemination activities was to share learning about the challenges and achievements of the group clinic model as it was implemented across the sites, so that others could understand and, potentially, replicate the model. As the project unfolded, dissemination was focused on sharing the results of the realist review, the co-designed new care model, its evaluation and messages for generalising findings to a wider context. We also focused on disseminating specific outputs related to co-design, so that others could learn from our successes and failures and apply these to their own service improvement work.

Patient and public involvement processes can bring challenges relating to the relationships of power between patients and public services,62 and we were mindful of this in our PPI and dissemination activities, for example involving a young person in the design and delivery of stakeholder events.

Patient and public involvement methodology

The main methods employed for involving patients and the public, local and national stakeholders and the wider dissemination list included the following:

• Co-design. A co-design approach to developing the group clinic model supported involvement from young people, clinicians, commissioners and others from the outset.

• Management of the research. An external steering/advisory group was convened and worked alongside the research team throughout the duration of the research, and included a patient representative from Diabetes UK with lived experience of T1D as a young adult.

• Developing participant information resources. Patient representatives and stakeholders were involved in reviewing all patient-facing documents (e.g. information sheets and consent forms).

• Dissemination of research findings. We planned to produce a range of events and outputs, including stakeholder engagement events, briefing papers and summaries, and these are discussed in Chapter 9. Our intended target audiences included young adults with diabetes (‘patients’) and stakeholders with roles in service use, service delivery, policy-making and health service design. In addition to this, we used social media engagement though our website and project-specific Twitter (Twitter, Inc., San Francisco, CA, USA; www.twitter.com) account.

Dissemination networks

We built wide networks for dissemination, drawing on the contacts of the main project partners. This included the following:

• local clinical and academic networks –

  • institution based: Queen Mary University of London, University College London, University of East London, BH, Newham CCG and Newham Borough Council

  • Local Transforming Services Together Programme

  • NHS England London Region Children and Young People’s Programme

  • Improvement Science London

  • NIHR Clinical Research Networks North Thames.

• clinical and patient networks –

  • Diabetes UK.

• strategic and national networks –

  • national children and young adult working groups chaired by the national leads for children and teenage and young adults

  • royal colleges, including the Royal Colleges of Physicians, General Practice and Paediatrics and Child Health.

• national policy forums –

  • NHS, Public Health England and the Department of Health and Social Care and their voluntary sector partners via the Health and Wellbeing Alliance (a partnership between sector representatives and the health and care system)78 and the Child and Maternal Health Intelligence Network. 79

Attendance at phase 1 co-design sessions

The composition of the co-design sessions that took place were as follows:

• Patient sessions. Six sessions were planned and four took place, and these comprised a single young adult with diabetes with a facilitator. The young adults comprised two females aged 18 years, one female aged 20 years and one male aged 24 years, and between them represented people living with T1D and T2D of varying duration.

• Staff sessions. Two staff sessions took place at NUH, one with 6 and one with 10 participants. Participants comprised a range of professionals and stakeholders, including dietitians, specialist nursing staff, a CCG commissioner, representatives from primary care, representatives from the voluntary sector (Diabetes UK), consultant diabetologists and reception staff.

• Joint patient and staff session. For the joint session, the professionals attending one of the group sessions and two of the young people who had been interviewed in patient sessions met together. The service users had separately prepared three issues to present to the other group and wide-ranging discussion ensued.

It proved challenging to engage young people in co-design and, although several expressed an interest in taking part while discussing this informally by telephone/instant message/in person, many lost interest when followed up to confirm dates and details. Many of those who did attend arrived late or had limited time available. Barriers to attendance and participation included educational commitments and caring responsibilities at home.

Major themes arising from the phase 1 co-design

Overall, the co-design process demonstrated that young people and staff shared similar ambitions for the new group clinic model in terms of bringing a more social and participatory approach to a medical issue. Running three types of co-design session, for (1) young adults only, (2) staff only and (3) joint young adult and staff, helped to understand areas of potential difference and to draw together consensus and a working model for the group clinics. There was reassuring consistency across all co-design sessions that the group clinics should address the specific needs of young adults at a challenging life stage, and the sessions reflected a shared understanding that current care models may not currently engage them well or meet their perceived needs. All participants in the co-design sessions felt optimistic that group clinics might be able to play a positive role in delivering better care for young adults with diabetes.

However, there was significant uncertainty as to how the group clinics should be delivered, and it was felt that specific design aspects would need to be developed and tested as they were implemented. Therefore, the co-design had a limited number of ‘hard-and-fast’ recommendations. Further concerns were raised, particularly by staff and commissioners, about how a new model of group clinic-based care would fit into the existing NHS framework, and how this could be resourced and structured appropriately so that it could contribute to existing NHS clinical frameworks. There was tension between this potential organisational constraint and the need for the group clinics to be flexible and adaptive to adequately meet the unpredictable and changing needs of young people.

The outputs and recommendations arising from the phase 1 co-design were as follows:

• A group clinic is a good idea for supporting diabetes self-management in young people and for reducing feelings of isolation, particularly in local communities. However, it was recognised that attendance at group clinics would be a challenge to young people with diabetes.

• Group clinics should include young adults with all types of diabetes, irrespective of diabetes type, as this reflects shared experiences and life stages and their displeasure with being defined by their diagnosis.

• The purpose and benefits of group clinics (for both patients and staff) need to be clear to everyone taking part from the outset. Everyone should be clear what they will get out of the process, and this should be an appealing outcome for them. Young adults expressed a further wish to know what the group clinics would deliver, and to know in advance the content of sessions so that they could decide whether or not to attend.

• Young people are nervous of being judged for not taking good care of their health. Promoting feelings of safety, security, confidentiality and trust in the group clinics was deemed important. The young adults felt that a group clinic may not help them to discuss very personal and individual issues, but they might help them to address wider (including emotional) challenges in managing their health and look beyond ‘only’ medical issues.

• The facilitator role is critical to delivering an acceptable model of group-based care and requires skills in youth participation.

• There was no consensus on the ideal timing of the group clinic. There was a clear recognition that the clinic times should fit around work and educational commitments, but that the model would need to develop flexibility and use ‘trial and error’ to establish what works best. Clinics should have a minimum of two people and a maximum of around six to eight people. Parents were considered to have an important role in supporting young adults with diabetes, but should not be part of the regular groups.

• Group clinics may not fit easily into the existing NHS structure and constraints, and may need more people/resources than anticipated to keep them going. It may also be necessary to be creative about how to measure successful outcomes and explain the benefits.

• Groups could potentially be combined with traditional clinic visits and one-to-one time, or there may be other ways of ‘pegging’ groups to existing appointments or schedules. There was uncertainty as to whether young adults and their clinicians would want group clinics to replace some of their routine one-to-one care appointments or run in parallel with them, and it was felt that this should be established during their implementation and evaluation.

The findings of the phase 1 co-design were summarised in a co-design report (see Report Supplementary Material 1).

Initial group clinic design

We used findings of our co-design process to implement an initial model of group clinic-based care for young adults aged 16–25 years with all types of diabetes. We used the name ‘Together Study’ to give the research an approachable and descriptive name. We aimed to form groups of 6–10 young adults who would be invited to (and hopefully attend) a facilitator-led group clinic every 3 months, although we noted that the co-design findings indicated that a group clinic could comprise as few as two people. The hope was that groups would build relationships and form their own identity, get to know each other and build rapport. All group clinic sessions started with introductions and icebreakers, followed by setting ground rules within the group to ensure that the young adults felt safe and secure in the session, the importance of which had been highlighted in the co-design.

The co-design findings led us to decide that the group clinics would be led by a diabetes specialist nurse with specific training in facilitation, and who had experience working with young people in a non-judgemental way.

We noted the clear suggestion from the co-design that group clinics should support diabetes self-management, so the content of the group clinics was designed with this in mind. Given that young adults and staff expressed a wish for the purpose of the group clinics to be clearly stated, we planned that the content of each session would be predetermined and made apparent to the invitees. A list of potential group clinic topics was drawn up by the clinical team and included (1) self-management-focused subjects, such as carbohydrate counting and sick-day rules; (2) broader lifestyle-related topics, for example psychological health, sexual health or women’s health (covering menstruation, pregnancy and polycystic ovary syndrome); and (3) care process-themed topics, for example initiation of flash glucose monitoring (Freestyle Libre, Abbott Laboratories Limited, Maidenhead, UK) and review, and annual review checks. Sessions were frequently supplemented by experts in specific areas depending on the topic, for example a youth outreach worker from the local sexual health services delivered a session on sex and healthy relationships. The co-design participants highlighted the importance of giving clarity regarding the purpose of the group clinics and, for this reason, we ensured that all notifications and reminders about sessions contained a description of the topic that would be covered using accessible language (e.g. a session on physical activity delivered in January was called ‘New Year, New Me’). Invitations and reminders for the group clinics used standard hospital processes when possible, and were complemented by text messages sent by the facilitator. The majority of group clinic sessions were designed to be open to all young adults, irrespective of type of diabetes, but a few sessions were targeted at specific patient groups (e.g. a women-only session discussing women’s health issues, a Libre start session for eligible young adults with T1D).

The co-design did not lead to concrete views on the location of the clinics, but given the concerns that it would be difficult to integrate them into existing care, it was decided to hold the group clinics in a large room on the hospital site close to where the diabetes clinics are run. After trying out different start times, the group clinics settled on a 16.00 start because this was thought to offer the most flexibility around daytime education or work and evening work and social plans. Sessions were facilitated by an experienced diabetes specialist nurse.

The group clinic model was developed to run alongside routine care initially, offering additional group-based appointments that were mostly scheduled on different days from usual care. The diabetes specialist nurse delivering the group clinics was also ‘additional’ to the existing team, although she had previously been an employee of the wider diabetes service. Our prespecified plan had been that there would then be a transition from a model of ‘additional care’ to one in which some routine one-to-one care would be ‘replaced’ by group clinics. This transition was expected to happen after approximately 12 months, once the research team and steering group were happy with the progress (assessed through monitoring of engagement, attendance and experience) of the group clinics.

Monitoring the roll-out of group clinics

We kept detailed spreadsheets recording numbers of young adults approached and consented at the group clinic sites, as well as the number of successful and unsuccessful contacts with group clinic study participants and their attendance at group clinic sessions. These data were collected by the research team and reviewed jointly by the research and clinical teams to monitor implementation of the group clinics and to allow for responsive adaptation to the care model. This also fed into the second, and iterative, phases of co-design.

Early adaptations to the group clinic model

Low attendance at the group clinics was evident from the early stages of roll-out: this had been anticipated by the young adults at the co-design. This low attendance occurred despite young adults showing their interest in joining the care model by signing up to be participants in the research. We, therefore, changed our invitation approach, and instead offered the group clinic sessions to all consented participants (unless otherwise indicated, e.g. by a women-only session), rather than try to create parallel group clinics, which we had planned to do to try to facilitate group cohesion. This approach provided participants with more flexibility and choice about which clinics they would attend, which had been deemed important in the co-design.

A youth worker joined the team after about 6 months to support engagement with the young adults. The youth worker took over the invitations to group clinics (by telephone and text message) and contributed to the group clinic facilitation with expertise in using a non-judgemental and inclusive approach to engage young adults and make them feel safe sharing personal information in a group setting. This was achieved using initial icebreakers at the start of group clinics, setting boundaries and using a young person-centric, facilitatory approach to delivering the group clinics.

During the initial roll-out, it became apparent that group clinics were unlikely to easily replace routine care, partly because of the low attendance at group clinic sessions and partly because of administrative and information technology (IT) barriers in developing a flexible model of care in which a young adult could easily cross in and out of group and existing one-to-one care appointments. We, therefore, did not proceed with the intended transition from ‘additional’ to ‘replacement’ care.

Involvement of an additional research site

A second site, CMH, was opened 1 year after initial study set-up to expand recruitment and give additional opportunities for study engagement with, and attendance at, group clinics. Having a research site after gaining 1 year of experience running group clinics at NUH also provided a useful contrast to study (1) the delivery of a more ‘finished’ group clinic model that had been developed and improved through iterative co-design, and (2) the implementation in a different clinical service. The group clinics at CMH were also facilitated by a diabetes specialist nurse and youth worker, and were scheduled on the same day as the routine young adult clinic so that people could attend both a one-to-one appointment and a group clinic in one afternoon.

Staff training

Staff who delivered the group clinics were all experienced clinicians with several years’ experience of delivering both individual care and group-based educational sessions (e.g. DAFNE courses) to people living with diabetes. However, staff training needs were identified during the co-design and the development of the group clinics, especially around taking a facilitatory approach to the group clinic delivery. All clinical staff involved in delivering group clinics were offered (and attended) a 1-day facilitation skills workshop. The youth worker, with experience and expertise in facilitation and working with young people, offered informal training for staff involved in the group clinics. Staff involved in delivering group clinics at NUH gave training and mentorship to staff at the CMH, and there was an easy rapport between the two sites so that support was readily available when required.

A training manual was developed by the study team and researcher in residence to support health professionals who facilitate or support group clinics in this study and in future work. The manual covers (1) preparing for group clinic sessions, (2) delivering the group clinic session and (3) useful resources [for the training manual see the NIHR project web page; URL: www.journalslibrary.nihr.ac.uk/hsdr/NKCR8246).

Phase 2 and iterative co-design

The second round of co-design took place after group clinics had been under way for 9 months at NUH and as CMH started up its own group clinics. The focus of the second round was on suggestions for improving the model. The procedure mirrored the first round by including a session with young people (n = 6; this time these were young people who had experienced a group clinic) and a session with professionals (n = 3) who were involved in running groups. Participants were asked the following key questions:

• If we wanted to change the model, what would that look like? (e.g. should it be more peer led, and if so, how?)

• How should we try to enhance engagement with and attendance at group clinics (e.g. change to the role and remit of the youth worker)?

• Do we need more work before and after groups with young people to prepare/debrief?

• How is the relationship between the different professional groups working, and does this need improving?

The findings of the phase 2 co-design were summarised in a co-design report (see Report Supplementary Material 1).

Improvements to the group clinic model

Overall, the second phase of co-production confirmed the messages that we heard in phase 1, but provided some more detail about how the model could be optimised. The role of the youth worker and other staff who were able to engage with young people effectively was particularly important, and this included a focus on building group relationships, establishing boundaries and confidentiality. Young people liked the youth-focused nature of the groups and the space that they gave them to raise issues about their diabetes that they would not raise elsewhere.

Again, as with the first round of co-design, there was a lot of synergy between the messages from the two groups. Overall, key suggestions for changes to the group model included:

• experimenting with minor changes to timing, but probably staying within the overall 17.00–20.00 window

• experimenting with the extent to which the groups were ‘pegged’ to existing appointments and clinics

• building into the model realistic expectations of attendance and engagement, and understanding that attendance and engagement could take considerable time (beyond the duration of the research) to build up

• continuing to encourage external contributors to the group clinic themes, but ensuring that they can fit in with the unique delivery model adopted by the group clinics.

Motivations for engaging with group clinics

In interviews with young people, we explored what drove them to consider engaging with a new care model centred on group clinics. Young people explained how they were primarily motivated by the need to meet other people their age and understand how they manage their diabetes. Overall, a minority of young people recruited into the study had previous experience of group-based structured education. The low prior uptake of group-based structured education in this patient group may explain why the co-design process generated a model of care that was heavily focused on educational topics that are ordinarily part of programmes such as DAFNE. At NUH, young people who were recruited into the study and attended group clinics were more likely to have previous experience of group-based education than those who were recruited but DNA, suggesting that prior experience of group education may have been a positive influence and that there may be an appetite to receive more group-based care. Young people were interested in learning from the experiences of their peers, but also to balance this learning against clinical advice from health professionals (Q1 and Q2).

Some suggested that by meeting others with better control they would become more motivated to manage their condition. They expressed a need for emotional support from peers facing the same challenges and suggested that this would make them feel less isolated. For some, the key driver was listening to others, rather than talking about their own difficulties. Young people became interested in group clinics to bring variety to their usual care and to find an opportunity to extend beyond what was normally discussed in individual appointments (Q3).

Low uptake of group clinics and ambivalence around attending

The quantitative data show that, overall, the attendance at group clinics among recruited participants was low (32% and 33% at NUH and CMH, respectively). Not all patients were enthusiastic when group clinics were first introduced to them. Some described feeling ambivalent or in ‘two minds’ about this new service model (interview 12, patient 7). They were reluctant to attend as they did not know what to expect from the group sessions and how it might feel to attend clinics with other people. Some had not disclosed their diabetes in their communities and were worried about meeting people from their social circle. Others, although recognising the value of meeting peers, were worried about whether or not they could forge a connection to allow them to share deeply personal experiences (Q4).

Despite initial ambivalence, some of those who attended group clinics found that their concerns quickly subsided and they became comfortable with the new service model (Q5).

Some patients expressed the opinion that group clinics were not right for them at the time, as they did not feel ready to engage with their condition or place diabetes at the forefront of their interactions with other people their age (Q6).

Other reasons for low attendance included patients finding it difficult to fit group clinics alongside other life commitments and responsibilities (e.g. family, education). Those in fixed or flexible employment were often unable to take extra time off work to attend both group clinics and scheduled one-to-one appointments. These logistical barriers had been discussed at length in the co-design, but with the conclusion that there was no one ideal time for the group clinics to be run given how varied and unpredictable the lives of young adults are. Over the 2 years that group clinics that were running, some patients moved away for work or study and were unable to continue attending. A handful of patients also mentioned how they feared that group clinics would eventually replace individual appointments for reasons of cost efficiency, which made them less willing to attend sessions to avoid showing support for this model of care.

What is the experience of care delivered in group clinics?

Young people who attended group clinics discussed their experiences as predominantly positive: they felt better understood and supported, learnt new things from peers and clinicians, normalised diabetes self-care and became more motivated. There were a few instances in which peer comparison did not lead to motivation for improved self-care. Although enjoyable, group clinics required a certain level of input and responsibility from patients (especially when the number of young adults in attendance was small), and the internal power dynamics of the group had to be managed carefully.

Setting up a new model of care using group clinics

Clinical and non-clinical staff involved in setting up and delivering group consultations described the process as a slow and steep learning curve, which involved a lot of trial and error. All staff members were new to group consultations and, at the time that the clinics were implemented, there was little previous learning or guidance to draw on. Interviews with DSNs, who had the most responsibility for the organisation and delivery of the group clinics, indicated enthusiasm (‘I want to learn. And this is something completely new’ – interview 1, DSN), but with this came realisation of the challenges and efforts required to deliver benefits for patients (‘I feel it’s definitely beneficial. I’m just trying to think how we can, how I can manage it’ – interview 26, DSN). A successful clinic was hard to achieve but rewarding: ‘when we get a good group it really lifts our spirits up’ (interview 2, DSN).

A significant part of developing and implementing this new model of care involved building trust and relationships among the clinicians involved, as well as with patients invited to take part. One of the DSNs who had not been involved with the young adult clinic previously described how it took time to build these relationships on which group-based care depended (Q64 and Q65). In-depth knowledge and good rapport with young patients and sometimes with their families was needed to support attendance and engagement (Q66).

The process of selecting patients for group clinics was not always straightforward. Health professionals had initially suggested that group clinics would work better for newly diagnosed patients who had more need and motivation to learn about their condition, but that everyone should be invited and allowed to judge whether or not it would be useful for them to attend. During interviews, there seemed to be little difference in motivation to attend between young adults who had had diabetes for many years and young adults with a more recent diagnosis, and there was appetite to learn from each other’s different experiences. Although a clear outcome of the co-design was that young adults with different types of diabetes should be included in the same group clinics when appropriate, there were some instances in which group clinics had to be tailored to the specifics of diabetes type and other factors (e.g. Libre clinics were available only to young adults with T1D meeting nationally agreed criteria for eligibility, or women-only sessions on periods and pregnancy). Bringing together patient groups in purposeful ways created ‘hidden work’ as it required careful deliberation between clinicians to allow learning to emerge (Q67 and Q68).

To communicate with young adults about group sessions, the diabetes nurses trialled different options (e.g. letters, text messages at different frequency and telephone calls) and attempted to move away from formal NHS language (e.g. as used in clinic letters) to engage patients in a more direct, age-appropriate way that would not feel alienating (see Chapter 6, Group clinic invitations: responses and attendance). It became necessary to spend time and effort to sustain communication with patients and ensure that enough people would be attending the clinics to make the effort of organising the sessions worthwhile. Non-clinical staff were also needed to support communication with patients, as explained in Chapter 5, Co-design: phase 2, Phase 2 and iterative co-design, on the role of the youth worker.

In early clinics at our second site, CMH, patients invited to group sessions also had their individual appointments arranged for the same day to provide combined individual and group care, as well as to reduce how often patients were asked to come to clinic. This raised the level of effort for clinicians even further, as the diabetes nurse had to rearrange appointments and communicate with patients about this change (Q69). Eventually, CMH adopted the same recruitment approach as NUH, where all consented patients were invited to attend the same group clinic regardless of when their individual appointments had been scheduled for. Although this meant that less co-ordination was needed, different operational problems emerged (Q70). Trying to keep track of which patients attended each of the sessions and how to set up groups for subsequent clinics was also viewed as messy and cumbersome (Q71).

Other operational challenges ensued, such as booking seminar rooms when there was only one room available for use by several clinical services in each of the two hospitals, and adjusting booking processes to accommodate a group session compared with a standard individual appointment (Q72).

Group clinic delivery was not simply a matter of delivering individual care to multiple people at the same time. It required a different degree and mode of preparation by clinicians delivering the sessions and incorporated aspects of education around broad lifestyle issues, specific diabetes self-management support and delivery of care. At initial stages, there was a lot of uncertainty around what preparation would lead to a successful clinic (Q73 and Q74). Patients also mentioned that group clinics worked less well when clinicians were unprepared to adjust their content or usual individual practices for the group setting (again pointing to additional work needed to make group clinics work: Q75). It took time to build a process from the ground up, as clinicians and patients alike familiarised themselves with this new model of care, and found approaches that worked well and supported interaction in the group setting. This often required group facilitators to work with clinicians in advance of the session to ensure that the content was appropriate, but also following up after the session to address any feedback from patients, record all details as needed and provide individual support (Q76–78).

Although patients provided broad suggestions about the content of group clinics, translating these into sessions that were beneficial and appropriate for everyone required significant work. In-depth knowledge of patients, through either experience or careful review of patient records, guided the decisions of DSNs, including how to focus each of the sessions, what speakers to invite, and how to steer the discussion so that patients would feel supported and gain value (Q79).

Some clinicians found it difficult to address individual problems in the context of group clinics, compared with how these would be managed in a one-to-one consultation (Q80). These difficulties led to some sessions being heavily focused around broad support for education and self-management, without what might be construed as ‘care’ (e.g. review of blood glucoses, starting a new treatment for an individual) being delivered. It was assumed that the ‘anxiety’ to discuss individual diabetes issues would subside once health professionals and patients became more comfortable with the group clinics model (Q81). Indeed, Libre sessions carried out at NUH involved significant clinical discussion on individual results that were downloaded from the Libre device and displayed on a computer screen for everyone to view. By the time that Libre clinics were delivered, young patients had built up enough trust between them and with the clinicians delivering the groups to be comfortable with individual discussions in a group setting (although some preferred to see others’ results first before agreeing to show their own).

A lot of the time, clinicians had to steer discussion in ways that would indirectly open up opportunities for learning and support, rather than themselves directing questions about self-management to individuals, as would have been the case in one-to-one consultations. For example, if clinicians had looked into someone’s record and realised the patient did not understand how to manage insulin-to-carbohydrate ratios, they would bring this up as a topic for general discussion in the group session with the hope that the patient would indirectly gain the knowledge needed. This required a lot of background work and co-ordination, also making sure that the discussion remained relevant for everyone while addressing individual needs (Q82 and Q83).

In group clinic delivery, flexibility and adaptability became important in different ways. First, in many sessions it was difficult to predict who would be attending (and whether or not they would arrive on time); therefore, facilitators had to adopt a flexible plan to address different patient priorities, needs and abilities as they emerged in the moment (Q84–86). Although recognising its importance, some clinicians found it difficult to manage the unpredictability inherent in interactive group discussions compared with more structured or scripted education programmes. The dual pressure of delivering good clinical care and education while facilitating a group of young people who had never met each other (Q87 and Q88) was notable. In some situations, it was important for clinicians to engage proactively in emotional work to support groups in which conflict and competition emerged through interaction (Q89 and Q90).

As a new model of care delivered in the context of a research programme, group clinics were less integrated in the day-to-day planning of the diabetes service, which meant that interdependencies with wider care needed to be actively managed (more prominently at NUH as this work was spread across more health-care staff). For example, co-ordination was needed to ensure that patients understood the different purposes of individual and group appointments, and continued to attend both. Ensuring continuity between what was covered on an individual basis and what was discussed in the context of the group also became a matter of active discovery, to fill gaps and take patient care a step further each time (Q91). Based on their experiences delivering group-based care, clinicians took a pragmatic view on the outcomes that could be achieved with a new group clinics programme. They valued group clinics primarily for their potential to engage young patients who previously were not attending their appointments (Q92 and Q93). They also talked about the outcome of group clinics being to help young people feel more supported and to change the conversations happening on a one-to-one basis with clinicians (Q94 and Q95).

Differences to the delivery of existing one-to-one care

Patients commonly discussed differences between group clinics and individual appointments. Some suggested that group clinics, by opening up discussion on self-care between peers, became more focused on ‘how to live’ with the condition, rather than just seeing diabetes as something young people need to ‘manage’ clinically. They also described feeling better able to contribute their experiences and ask questions in the group clinics, whereas in individual appointments they often found it difficult to voice their difficulties or engage productively in the interaction (Q96 and Q97).

A patient who had recently transitioned to the adult service felt the need to be more frequently monitored and saw group clinics as providing this additional point of contact. Another patient suggested that young people felt less comfortable with individual appointments because they perceived them as ‘professional’, an environment focused around the clinical transaction in a way that felt impersonal, which would also explain low attendance rates (Q98 and Q99). The power difference in individual clinics and the obstacles this posed in the consultation was also recognised by clinicians themselves (Q100–102).

In group clinics, patients saw an opportunity to discuss with peers how to go about making changes, rather than just what changes to make, with others who understood their experiences (Q103 and Q104). Being able to spend more time with patients in group clinics than in individual appointments was also deemed important by some health professionals, such as in the diet sessions (Q105). Patients and health professionals alike saw value in combining individual clinics and group appointments. They found that these two different consultation modes fulfilled different purposes; individual appointments would cover individual management, treatment options and urine or blood test results, whereas group clinics would cover topics of common interest to everyone and sharing experiences (Q106–108). There was a clear feeling that the review of blood glucose readings and/or insulin dose adjustments were more comfortably suited to individual appointments; in some group clinics these were successfully covered, but only with significant hidden work prior to the group clinic to be ready to steer the discussion in a way that could meet individual needs (Q109–111).

Very few patients considered group clinics as something that would substitute for a large number of individual appointments. There was one suggestion for individual appointments to be driven by patients when they felt that there was need, rather having appointments over prespecified periods (Q112). Only one patient, who had been struggling with diabetes and self-care, expressed more confidence in attending group clinics than individual appointments, and a preference for continuing in a group for her diabetes care (Q113). One of the consultants also mentioned an encounter with a patient who attended group clinics but did not want to engage with his usual care (Q114).

Summary of qualitative findings

Our rich qualitative data indicate that the young adults with diabetes in this study had positive experiences of group clinic care. In particular, the ability to share understanding of diabetes and normalise experiences with other young adults with diabetes led to feelings of being supported. The situated, social learning that came about from the groups and the facilitatory approach used by the health-care professionals delivering them was also favoured. However, both young adults and health-care professionals noted the extra work required in joining a new model of care, including the need to negotiate new roles and relationships, the potential for confrontation and the changed power dynamics within groups. Unexpectedly, the diversity of attendees within the groups (e.g. by duration of diabetes, type of diabetes and age) was mostly seen as a positive to expand the opportunities for learning and sharing experiences. Group clinics incorporated educational content, support for self-management and the delivery of care, but the last topic was seen as more of a challenge as it was felt to require a greater individual focus than could be supported in a group setting (e.g. in supporting insulin dose adjustments or reviewing blood test results). Some group clinics focused heavily on the delivery of care (e.g. a session on annual review diabetes checks), and others incorporating Libre initiation and follow-up, but the majority focused on supporting self-management and education. The ability to receive one-to-one care in addition to group-based care was considered to be important to all those involved, and was perceived as something that could augment individual care and provide flexible, multidimensional care, support and education.

The delivery of group clinics within an existing model of care based around one-to-one appointments was challenging, in part because of the need to recruit individual patients and follow formal research processes, and also because of the amount of hidden work required to deliver group clinics and engage the young adults with them. However, the group clinics were flexible and adaptive, for example supporting the change in home blood glucose testing from capillary testing to Freestyle Libre. What evolved over time was an understanding that group and one-to-one clinical care fulfilled some different purposes but that the two worked synergistically in delivering a model that could better meet the wider needs of young people with diabetes. Existing staff were critical to the delivery of group clinics, and the role of the youth worker was highly supported in engaging young adults and providing a facilitatory and age-appropriate approach.

Intervention costs

Our microcosting of the group clinic intervention included both the co-design process (at NUH and CMH) and the delivery of the group clinics. The summary of co-design costs is shown in Table 14. This includes costs associated with designing and running the workshops, and costs of recruiting workshop participants. Staff salaries (across all professional groups) were the main expense, amounting to £8175. The total cost of designing the clinics was £8806.

The costs of delivering group clinics were estimated separately for NUH and CMH (Tables 15 and 16). These included costs of staff running the clinics, arranging appointments and chasing non-attendees, booking rooms and refreshments, and making patient notes. Owing to the different number of clinics at each site (22 and 6 at NUH and CMH, respectively) there was a substantial difference in the total cost of delivering the intervention (£11,992 for NUH and £3432 for CMH). However, the average cost per clinic was very close for two centres (£545 and £572 for NUH and CMH, respectively). The average cost per participant was higher at NUH (£158) than at CMH (£127) because of poorer attendance at NUH (average number of participants was 3.7 for NUH vs. 4.5 for CMH) (see Tables 15 and 16).

Sensitivity analyses were conducted to allow for different attendance rates and number of clinics (see Appendix 7). The number of clinics varied from 4 to 22 and the number of participants varied from 2 to 10, to reflect observed differences between two centres. Results demonstrate intervention cost per participant to be similar for each site when adjusted for both the number of clinics and the number of attendees (see Appendix 7).

Cost of usual care

The cost of usual care was estimated for scheduled and unscheduled use of health-care services (Tables 17 and 18) using the National Schedule of Reference Costs 2017–1874 (see Appendix 4). The cost of scheduled care (i.e. appointments with diabetologist, diabetes nurse, dietitian and psychologist) was £723 per patient per year. The number of missed appointments accounted for 39% (115/293) of scheduled appointments (see Table 17). The annual cost of missed appointments was £256 per patient, amounting to 26% (£256/£979) of the total annual cost of scheduled care.

Unscheduled care (i.e. GP and specialist and practice nurse contacts, A&E attendance and hospital admissions due to hypo- and hyperglycaemia) amounted to £2566 per patient per year (see Table 18). The cost of unscheduled care was 2.6 (£2566/£979) times higher than the cost of scheduled care, indicating that the management of diabetes complications in young people is costly.

Relationships as the foundation to improving care

The primary motivation for the young adults in our research to engage in group clinics was to meet other young people living through similar experiences to their own. Despite structured education being one of the cornerstones of good-quality diabetes care, the majority of young adults (nationally and at our research sites) had not previously attended this nor had had the opportunity to engage in tailored education programmes for young people. The opportunity for young adults to build relationships with each other in a group context, delivered regularly and as part of routine care, is significant and novel, and our empirical research suggested that this was beneficial. The young adults who attended the group clinics felt understood and supported, and that the care delivered in them, through the interactions with other young adults and with health-care professionals, prioritised their emotional needs. They found that the social environment was also conducive to their learning (and relearning) diabetes self-management. These experiences coincided with a life stage at which the young adults were negotiating their own independence and control of diabetes and, although this process and its timing varied considerably between young people, group clinics seemed to support this challenging process. Peer support was a component of the emotional care delivered in group clinics, and its role was identified as being that could helpfully normalise the experience of having diabetes and set benchmarked goals and improve self-efficacy. However, some of our group clinic attendees found that the social environment with peers could be demotivating when there were significant differences in group clinic attendees and their diabetes (e.g. in time since diagnosis).

These empirical research findings are consistent with one of the main themes identified in our realist review:44 that the practical sharing of experience, contextualisation of (abstract) medical advice, and exchange of tacit practical knowledge and skills are key elements of successful group-based care. The review also highlighted these as important ways for young adults to gain confidence and motivation from each other and to reduce diabetes distress.

The realist review also highlighted the importance of instilling a connection and sense of affinity between group clinic members, as well as building on pre-existing patient–clinician relationships. However, to achieve this, it was important to recognise that actual and perceived similarities between young adults are not always aligned and to have a broad perspective on what similarities are (e.g. common experience and developmental stage, rather than simply type of diabetes or age). In our empirical research, we had anticipated that young adults would attend group clinics repeatedly and that cohesion would form between repeat attenders; however, low attendance meant that this rarely happened. Instead, group clinics became dynamic and flexible with respect to attendees, content and interaction with existing one-to-one care. This flexibility suited the young adults, but placed greater responsibility on the staff delivering them to create affinity within the groups. The DSN and youth worker had critical roles in forming cohesive groups, and an environment to support them, through facilitation and relationship building. The emotional bond that young adults developed with the DSN was notable and a key factor to the success of the clinics.

An unintended, but predictable, consequence of group dynamics was the occasional occurrence of confrontation and conflict. This was managed by clearly setting boundaries and undertaking specific staff training on facilitation.

On balance, the qualitative analysis of our empirical research and realist review suggest that group clinics do provide valuable support for the emotional and practical needs of young adults with diabetes, via hands-on experience with, and modelling against, other young adults with diabetes. However, future research will be required to understand whether or not these positive experiences translate to improvements in clinical (including psychological) outcomes related to diabetes.

The challenges of delivering care differently

Prior to our undertaking this research, others had highlighted that there is no compelling evidence that delivering group clinics within a health service offers efficiencies over the usual care system. 41 Our own realist review concurred with this conclusion, highlighting that, although group-based care may lead to increased satisfaction, it also leads to a reassessment of individualised care needs, resulting in additional and dynamic demands on routine care. Furthermore, we found little evidence that group clinics could work solely as ‘replacement’ care and instead worked primarily in combination with one-to-one care.

Our empirical research confirmed findings from our evidence synthesis: we identified that group clinics did not replace routine care, instead becoming part of a broader and synergistic package of care. Our qualitative interviews with young people suggested that attending group clinics may have offered a means for young adults to use one-to-one care better and more flexibly. Health professionals also commented on how they were able to learn more about their young patients when observing conversations they were having with their peers, which helped to shift patient–clinician interaction and consultation focus in one-to-one appointments as well.

It is important to consider the scope of the ‘care’ delivered in our group clinics. Broadly, diabetes best practice care incorporates education on self-management and lifestyle; glucose-lowering treatment; glucose monitoring; and identification, prevention and treatment of diabetes complications, with gold standard practice set out in NICE guidelines,89 among others. There is little specific national guidance on the care of young adults (after paediatric transition) with diabetes. One of the main elements of the group clinic model that was developed in our empirical research was education and support of diabetes self-management, and it could be argued that this is already delivered in a group context via structured education programmes, such as DAFNE, although less broad in scope, particularly in relation to emotional and psychological health. It is notable that only a small minority of young adults participating in the group clinics had previously attended structured education, so it is perhaps understandable that the co-design of the group clinics led to this overlap. The group clinics covered care relating to diabetes treatments and identification of complications less frequently, and when they did this was predominantly in general discussions rather than tailored care delivered to individuals within the groups. This finding is not unexpected, and represents the boundary between what can be appropriately tailored to individuals within a group setting and what needs to be delivered in a one-to-one appointment. Overall, the delivery of care in our group clinics was nuanced and had significant inbuilt flexibility to be able to adapt to changing needs and context, and rapidly incorporate changes in service delivery and treatment, such as the NHS roll-out of Freestyle Libre blood glucose monitoring. The strength of the ability of our group clinics to deliver care beyond biomedical approaches and comfortably address emotional care needs was evident in the qualitative interviews with young adults. The group care seemed to open a new path for young adults to navigate their emotional needs both with each other and via a therapeutic relationship with the DSN facilitating the group clinics. This also led to conflict when a need emerged for participants to care for each other, but the conflict was managed well through facilitation and with appropriate staff training. It is hoped that future implementation and evaluation of group clinics may identify benefits in outcomes related to emotional health, such as a reduction in diabetes distress and improvement in quality of life. In turn, this could lead to more distal benefits in biomedical outcomes, such as glycaemic control, reduced progression to complications and reduced use of unscheduled care.

Attendance was low at the group clinics we offered, despite iteration and improvement of the design. The main reasons for non-attendance included other commitments (e.g. family, education, employment); uncertainty on what participation in group clinics might entail from a practical and emotional perspective; patient reluctance to engage with their diabetes, especially with other people their age; and fear of stigmatisation in their communities.

Low attendance may indicate a failure of the model or that the offer was not appealing; however, it is well known that non-attendance at outpatient clinics is common. 90 Low attendance may, in part, reflect the additional burden or anxiety of being a ‘research participant’ that would be ‘studied’ in the group clinics; however, as the young adults had been recruited and consented prior to their being invited to a group clinic session, it is unlikely that this is a major reason for non-attendance. Perhaps, more importantly, the offer of group clinics was an additional element of care, and young adults were notified of the topics/themes of the group clinics in advance, allowing them to make proactive decisions about whether or not they wanted to attend. We found that, although only one-third of those invited to group clinics attended, another one-third actively engaged with the clinical team by responding to the invitation and notifying them that they would not attend. This engagement without attendance suggests some commitment to the group clinic model, and indicates that young adults were engaging with it flexibly according to their interests and logistical constraints, and that those who did attend were likely to be particularly interested in and committed to the session. Despite the fact that group clinics comprised, on average, four or five young adults per session (lower than the target of six to eight set out in the co-design), it was possible to deliver a consistent and predictable clinical session that was favoured by the young adults, and this facilitated a ‘dipping in and out’ approach to attendance. Some young adults found the group clinics particularly appealing, attending multiple times. Our attendance findings contribute to further discussion of whether our group clinic care model is a new intervention or whether it represents an enhanced care model that systematises and joins up existing group education and peer support with individual clinician input and makes it more acceptable and appropriate to young adults: our research clearly suggests the latter.

From a staff perspective, delivering group clinics required different group facilitation skills than delivering one-to-one care that were not routinely part of clinical training. We also identified considerable implementation challenges and ‘hidden work’: building good working relationships with other clinicians and external speakers, including to co-ordinate on topics to be covered in clinics and style of engagement; gaining in-depth knowledge of patients and how to manage their unique needs in a group setting; operational work such as booking seminar rooms, sending invitations, managing attendance and scheduling follow-up; adjusting booking processes to accommodate group sessions rather than one-to-one appointments; and managing interdependencies with wider care given less integration with day-to-day planning of the diabetes service.

Some of this hidden work may be reduced without the requirement for research processes (e.g. consent) to run in parallel, and possibly with standardisation of administrative processes to embed group clinics within existing operational and record-keeping infrastructures. The critical nature of the DSN (facilitator) and youth worker have already been discussed in relation to their role in forming relationships within the groups, but their role extended beyond this, and they were central to the delivery and implementation of the clinics, including the flexible interaction with pre-existing one-to-one care.

The complexity of delivering group-based clinics within the NHS

The development of group clinics reflected the uncertainty, unpredictability and emergence that is well-characterised within complex systems, such as the NHS. 46 Complexity science provides a helpful dimension with which to consider our research findings. Our group clinics required continuous adaptation to be implemented and this was supported by our co-design process, which was iterative and continuous throughout the implementation of group clinics. In particular, co-design allowed self-organisation and sense-making across two NHS sites, and in a context that was frequently challenged by uncertainty, unpredictability and complex interdependencies. The ability for our group clinics to be dynamic and responsive to these challenges, and maintain their patient-centred approach, was a strength and could support larger-scale implementation in the future; however, future up-scaling would need further evaluation of effectiveness and cost. However, there were considerable challenges to involving young adults in discrete co-design events, and this may have resulted in a staff-centric approach to adaptation of the group clinics.

Our finding that group clinics offer young adults care that complements and potentially augments their existing one-to-one care, rather than replacing it, is important with regard to further scaling up. The inter-relationship between group-based and one-to-one care is likely to be dynamic and complex, and may necessitate continual adaptation of both. A blended care model that incorporates both one-to-one and group-based care could be an important area of future study, with regard to health service impact and cost.

Our costs analysis identified that, as expected, the per-participant cost of our group clinics were equivalent to a one-to-one diabetes appointment in existing care (£158 vs. £144), but future evaluation will be needed to explore how the costs of routine care would change with the addition of group clinics and if, together, they would be cost-effective by reducing diabetes complications, use of unscheduled care or missed appointments.

Feeling understood and supported

Quotation 11:

[. . .] you know it is not only the doctor there to listen to you, you know that there’s people that will understand your feelings and maybe feel the same way as you do so I think it was really good, I enjoyed that.

Interview 4, patient 1

Quotation 12:

Because when you’re explaining stuff that happens to you, for example when you get a low sugar level or high, it’s hard to explain it to a person who’s not diabetic. Even to the doctor, it’s hard to explain to them. They know what happens, but it’s like, feeling it is a different thing.

Interview 10, patient 5

Quotation 13:

I remember her [patient 13] saying to me, ‘I like listening to people so it’s like I’m here to listen to everyone’. But she didn’t like to be put on the spot to share her experiences. And that’s just where she was, even, I don’t know if you had noticed in the group clinic but her body language was quite [defensive].

Interview 20, DSN

Social and situated learning

Quotation 14:

I think with the [group clinic] with Dr [consultant name], I think that one was very, very important for me as well. Because I learned a lot as well. Because I’m used to jabbing, taking injections in my arms and stuff. And that’s something that I’ve been doing for a very long time. And I don’t really – and I’ve got lumps and stuff in my arms, and I don’t realise that the insulin doesn’t go through there.

Interview 13, patient 8

Quotation 15:

Can you tell me more maybe about what you enjoyed as part of the group clinics?

Conversations. And just getting like professional responses. Just knowing what’s right for diabetics and stuff, it’s very important I think [. . .] also the questions from everyone else, they gave me an insight into people’s lives about diabetes.

Interview 28, patient 17

Quotation 16:

It was just the ketone thing, I never knew that, and then when you said it I was thinking the last couple of days I’ve been having really, though I haven’t checked but I know that I’ve been having high blood sugars, even now my blood sugar’s high. [. . .] So I’ll check my ketones, thank you.

NUH, clinic 9, female patient diagnosed 13 years ago

Quotation 17:

And it was good that I passed it [to the newly diagnosed patient] to explain simply because I wanted him to get involved, he’s just completed one of the very good programmes, DAFNE, and his control is very good and he does do ketone monitoring.

(Interview 2, DSN)

Quotation 18:

I like it how we shared our experiences, what we went through and how, the symptoms of how we knew how to get it. And then we just give each other advice of how to control it or what to do. So, with the air bubble I know that now I can do the air shots and look really, make sure that it’s not blocked or bent.

Clinic 6, male patient

Quotation 19:

So it’s very insightful to know how other people are dealing with their own unique circumstances, and if I ever run into those circumstances, how I could apply it to myself.

Interview 14, patient 9

Quotation 20:

It’s very important to listen to how people manage their diabetes. [. . .] It’s always good to have someone with different experiences. Because that way, you know more about your diabetes. You know generally how to manage it well. And I think having only one way to manage your diabetes is not good. You need to always have a plan A, plan B, plan C. Just to make sure that you’re on the safe side of things.

Interview 16, patient 11

Quotation 21:

When you’re in a group environment you can – you don’t have to – like other people get to ask the questions that you wouldn’t ask, for you. And then you just get that insight. And it, it helps. And it’s just a more comfortable, relaxed setting. So you’re just – and you can gain a lot more information than you could with like 10 minutes with your doctor, so.

Interview 27, patient 16

Quotation 22:

I do remember thinking to myself ‘ah, I’m pretty sure this doesn’t really apply to me, because I don’t – I don’t take insulin injection’ [. . .] I felt like I couldn’t relate to a lot of the stuff they were talking about.

Interview 24, patient 15 with T2D

Quotation 23:

It’s not that I’m stubborn, but I don’t feel like I can learn something from them. It was just to socialise with them, and meet other people, and be like ‘ah, you’re suffering from the same thing I am, nice to meet you’. And when I found out about [the Freestyle Libre], I was like ‘oh my God, do you mind if I ask you some questions, because I’m really intrigued and I really want this’. And then he was showing me, saying ‘yeah man, it’s really easy, look you can scan it’.

Interview 15, patient 10

Quotation 24:

[. . .] despite the fact that I’ve said to them all those things individually they just said, ‘Oh I didn’t know’ and it was quite surprising because every time I examine their feet I tell them, I’m examining your feet for this. But somehow they had not made the connection.

Interview 18, diabetes consultant

Quotation 25:

Which you would think that, they probably would have known having diabetes for a certain amount of time, but it sort of just highlighted, I’d not say limitations, but how far their general knowledge when it comes to their disease area, how much they had, basically.

Interview 29, research nurse

Quotation 26:

[. . .] someone who’s been there and done that, they know, OK, you know what, if you do this, you’ll feel better, but if you did this you’ll feel worse. So people are talking from experiences in the group clinic which is actually a lot of help.

Interview 4, patient 1

Quotation 27:

You’re meeting people who have the same issues as you, who suffer from the same thing as you. Whereas the nurses, yeah they can help you, but, it’s wrong to say this, but like you’re not suffering with this condition – you can give advice and stuff like that, but until you’re dealing with it yourself you don’t really know about it.

Interview 13, patient 8

Normalising diabetes through sharing with peers

Quotation 28:

So you get to just have discussions, even before the group starts. About what people are doing to manage their diabetes. So that helps quite a lot. I think it’s helped me, for the most part overall, it’s helped sort of like normalise things. And if I do have issues, I’ve always got somebody to talk to, or communicate with.

Interview 14, patient 9

Quotation 29:

I remember I was saying that like within the workplace I would never tell people that I’ve got diabetes, and stuff like that. Now, the other day I was speaking to my friend about where I should be injecting, where I shouldn’t be injecting. Feel like now I’m a bit more confident and comfortable with it. And, and they know I need to jab. They’re even helping me to look after my diabetes, to do better control. So yeah, I think with telling people has definitely made a big difference.

Interview 13, patient 8

Quotation 30:

She [other patient] was explaining how she doesn’t mind injecting insulin in front of other people and stuff. I don’t do that, I like to just either go to the toilet or go somewhere, do it and come back, but obviously hearing other people might consider other approaches and stuff, because I’ve not, obviously I’ve not really known anyone with diabetes other than my sister before that.

Interview 5, patient 3

Quotation 31:

How, I just want to ask generally, how are you guys, like those on type 1, how are you guys finding carb counting? How do you get round it, how do you start all up?

I’m not going to lie I haven’t been really carb counting.

OK I’m glad to [have asked], I mean it’s a bad thing but it’s like I’ve been struggling so much I’m just like I’ve given up with it totally. Are you the same like?

[indicates agreement].

NUH, clinic 2

Quotation 32:

When someone else is talking, you know, give you the courage to talk as well. Give you the confidence. It’s good.

Interview 28, patient 17

Quotation 33:

These are other people who you’re with, and you know, diabetes is a very personal thing. And sharing that with other people can be a bit scary.

In what way?

I guess just talking about, I don’t know. Maybe not scary, but maybe more – it can be a bit embarrassing. Especially if you’re not looking after it well. Because then you have to talk about like what you’re doing with it, and how like if – how, how well you’re handling it, I guess. That might come up in conversation.

Interview 24, patient 15

Quotation 34:

I just felt like ‘oh my God’. He’s doing so well now. Because he’s like just recently diagnosed, and I’ve had it for so long, so. It must look like I’m not on top of it, he probably thinks ‘cor, she’s just doing what she wants, it’s not – she’s not like managing her diabetes’. But he doesn’t know, when he probably gets to 14 years, [laugh] he’ll probably be a bit lazy here and there.

Interview 9, patient 4

Quotation 35:

I was like ‘dude, you should test yourself’, and I just left him. But I get – I’m really blunt, like ‘you need to test yourself’. Just some people, it’s not worth arguing with. But, yeah. And it was funny, that was even outside of the clinic. Outside of the group clinic, he then decided to open up to two of us. It was just like ‘whatever, man’.

Interview 15, patient 10

Peer comparison

Quotation 36:

I feel like being around people who probably have good sugars will make me feel like ‘wow, oh my gosh, like I need to do something’. Because how is everybody else around me managing to control theirs, but I can’t manage to control mine?

Interview 13, patient 8

Quotation 37:

I sometimes I feel like, what the hell, why me? I’ve had it all my life. But then looking at how people react to it, I felt like, OK, thank God, I feel way better about myself, I don’t feel like that.

Interview 4, patient 1

Quotation 38:

And so what I was thinking is that would it get to a stage where it’s going to be hard for me to manage my diabetes. Yeah, it definitely did freak me out a bit, yeah.

Interview 14, patient 9

Patient ‘work’ and responsibility

Quotation 39:

Yeah and I had to get a blood test and a urine test and then I was waiting for ages, all in the space of 2 weeks. And then I’m constantly telling work, oh I’ve got an appointment for this. I first said, ‘oh I’ve got a diabetic appointment with my, with my nurse’. And she was like, ‘oh OK, that’s fine’, she’s changed my shift. And then next week I’m like, ‘I’ve got a diabetic appointment’. ‘I thought you had one last week, you didn’t tell me it was every 3 month’. ‘It is because this one is a group clinic so it’s a new thing’. And she doesn’t believe me so I have to bring it up, she doesn’t ask me but I bring it up just so she knows that I’m not messing her about. And I’m like, honestly, it’s a lot of work.

NUH, clinic 9

Quotation 40:

So, I know I attended one group clinic where – I forgot what the topic or subject was. But I didn’t know too much about it, so I didn’t speak as much. And I thought I didn’t engage a lot in the session.

But did you feel that you’ve gained from what other people might have been saying?

I have gained. Yes, I have definitely gained. But I didn’t deliver.

Interview 16, patient 11

Quotation 41:

Because I remember in school, the teacher used to like, encourage the students to respond. Here, it’s the same thing. I feel like the professional should encourage the patient to respond. And also, the patient should do their behalf, as well. Just like in school. Because if the student doesn’t respond, then there’s no point.

Interview 28, patient 17

Quotation 42:

One of the hardest things with the group session I would say is – I always get asked what exactly do you want next? Now I’m never too sure about what I want next, or what is going to happen in the next group session.

Interview 14, patient 9

Quotation 43:

Because he’s just recently diagnosed, so he’s still got a lot to learn. [. . .] I don’t want to throw him off, and he should just continue like to make sure that he doesn’t stop his checking, because once you stop it becomes a habit.

Interview 9, patient 4

Quotation 44:

And that was one problem that we had, where I got a bit emotional about it. Because it’s like I don’t want to open myself up to a room that doesn’t want to open themselves up. Because then I feel a bit of a flake. I look a little bit silly.

Interview 15, patient 10

Conflict and power dynamics

Quotation 45:

I felt like I was being judged [. . .] like he was trying to be the teacher [. . .] like his opinion was the right opinion [. . .] And I just felt like I was being targeted that day by him. And I had to calm myself down, because, I can be an angry person at times.

Interview 13, patient 8

Quotation 46:

But then there was one girl, and she was in self-denial [. . .] she went on holiday but didn’t even have to take her insulin [. . .] she would inject for only one plate of spaghetti, but have another plate. It was almost like she was admitting to her mistakes. But in a way that she was proud of it [. . .] If it wasn’t thanks to us making her realise that she shouldn’t have done that, then she wouldn’t have admitted it and then realised that she did wrong. So in some sense, it worked out well. [. . .] Because they may think it was normal. And then we tell them it’s not normal.

Interview 15, patient 10

Quotation 47:

I think sometimes within the sessions, we did forget to mention like the [ground] rules. Or I don’t know whether it’s [mentioned] because I’m coming in halfway through. Or maybe having the rules in the middle of the table, or somewhere where everybody can see it.

Interview 13, patient 8

Quotation 48:

I bite my tongue, because in a normal situation you’d tackle it totally different, in a group setting you don’t show them up [. . .] you’re just hoping that others come up with the answers [. . .] So the [patient] went to Switzerland and did not take her insulin with her. That was very dangerous yeah? The good thing is that the boys came up and, you know, kind of set her straight [. . .] I am sure she would never go back anywhere, even Birmingham, without making sure she carries it with her.

Interview 20, DSN

Quotation 49:

[. . .] one has to see every individual with an open mind, and then spend a lot of time listening to them. So, rather than giving them straight forward advice. Because, there are so many variables that is influencing that individual’s care, and then whatever we say in terms of their lab numbers, or from their glucose monitors or the sensor, gives us very little information, about the factors that is impacting on their overall control.

Interview 25, diabetes consultant

Quotation 50:

So there was a lot of discussion, you know, a lot of questions around you know, well what do you do if a young person isn’t managing their diabetes, or they’re going into hospital? [. . .] what’s the role of professionals, and how far can they go, how forceful can we be?

Interview 17, psychologist

Individual attention and therapeutic relationships

Quotation 51:

I felt comfortable in talking to [the nurse], a lot. I would go back and forth if I had any problems, I would communicate it to her. Even though she wasn’t my nurse, she was always there, helpful. When I had problems, she was the first person I contacted. So I think having someone there that kind of knows about diabetes and can guide me in the right way kind of helped as well. But I would definitely say that yeah, [the nurse] like filled in that connection, and that bond definitely helped me.

Interview 13, patient 8

How does the way group clinics are designed and delivered support good experiences for young adults with diabetes?

Quotation 52:

[. . .] sometimes there’ll be like five or six people, and then sometimes there’ll be one other person, or two other people. I’ll still talk, regardless. But if they’re shy, they’re going to be a bit more uncomfortable.

Interview 9, patient 4

Quotation 53:

[in a good clinic] you’d have more group involvement, instead of only one person talking, or individuals asking when they felt like they wanted to know things. Because then it just felt like a one-on-one session, with other people listening in. Which at the time, it was a bit weird.

Interview 14, patient 9

Quotation 54:

[group clinics] are amazing in their own way. And everyone can get a benefit out of them, if that person is willing to listen but also speak. Sometimes you won’t learn anything if you don’t decide to open up, and reveal your inner mistakes.

Interview 15, patient 10

Quotation 55:

But what I could say I could improve is, obviously I know some people are very busy, we understand that, but I think if we have the group clinics with more people in there, it will be more interactive. More people to socialise with. You know, experience more ideas, more support. I think that’s the only problem I could say, should be I think more people involved.

Interview 16, patient 11

Quotation 56:

I’m happy to see more people. Like we had a girl that wasn’t here today, we had her the other day, so. She was nice.

Interview 28, patient 17

Quotation 57:

[the last group clinic] went a little bit flat because, we had only two people and you can only do so much and [patient name] is quiet anyway. I knew, I could read [patient 2] thoughts anyway straight away that she wasn’t happy, that’s why I said to her, ‘sorry the two girls [didn’t come]’, because she was looking forward to seeing them.

Interview 2, DSN

Quotation 58:

At times, I was a bit worried, being the only one having type two. But, generally, it was very welcome [environment]. So, feelings of being left out didn’t last too long, to be honest.

Interview 24, patient 15 with T2D

Quotation 59:

I would continue coming. But I, I wouldn’t want it to go on forever. Like, but like for another like couple of months I wouldn’t mind coming at all.

And how would you make that judgement, to say you know, that’s been enough?

If things start repeating themselves. Like things I’ve already heard, and things I already know. Then I guess I’d just be like yeah, that it’s – I don’t need it any more.

Interview 27, patient 16

Quotation 60:

It’s not as fun when there’s not that many people, because it makes me feel like ‘oh, no one else is coming anymore, so I’m not going to go to the next session’.

Interview 9, patient 4

Quotation 61:

[. . .] no finger pointing or no blame zones. So, where the focus is to disseminate information, and to collect the thoughts of the individuals, and then to clarify those thoughts so that would have a better value for one-to-one discussion.

Interview 25, diabetes consultant

Quotation 62:

[. . .] particularly the two young women were starting to talk quite a lot and that was about them sharing, they were educating each other in those moments weren’t they? Because actually, they’re the experts on diabetes, not me [. . .] what I hoped would happen is that I direct it but learn something from them and they would learn from each other.

Interview 6, sexual health advisor

Quotation 63:

So I’ve been thinking about how to address that issue because I know if I ask them to bring their diaries they’ll never bring it. Again, it’s the personal thing. In DAFNE they have to, very strict. DAFNE doesn’t look at all those things that we’re looking at, how they’re going to feel and all of it, no, you commit you come, very regimental.’

Interview 2, DSN

Setting up a new model of care using group clinics

Quotation 64:

[. . .] relationships take time to build, specially trusting relationships. [. . .] And it’s not just me building relationships with the young adults, it’s me building relationships with the clinicians. So I haven’t worked with [name of clinician] before. So it’s, all these things take time, and I only work 2 days a week.

Interview 1, DSN

Quotation 65:

They don’t know me, young adults operate on building relationships which is the proof it’s taken so long to do that, you know, with the ones that are engaging, you know. [. . .] Today I feel very comfortable sitting with them and I can have a conversation not troubled by their diabetes but talk about everything else, you know, that I’m aware that is happening in their life.

Interview 20, DSN

Quotation 66:

You need to have an idea about the patients you’re inviting. You need to have a rapport with them, you need to have some contact with them. So for instance, if I didn’t get through to the patient themselves, I always have their parents – their mum’s number, ‘can you make sure they know that they have an appointment’. So, it’s just not the patient only, but their family is also involved.

Interview 26, DSN

Quotation 67:

I might’ve had consultant send to me such and such person [. . .] but when I’ve spoken to the DSN, who sees the patient far more frequently and spends a longer time, has said to me, ‘no, no, no, she’s very unstable, she’s having suicidal thoughts, she’s not going to be appropriate’. [. . .] There’s a lot of, it’s like a hidden work that’s happening that is not being captured.

Interview 1, DSN

Quotation 68:

So, there’s a lot that goes on in the background before, to try and understand who is going to be able to make use of this group, who is going to fit best with, who actually really needs individual work? Or who needs individual work first, and then they’ll be more ready for a group? And part of it is about the individual – you know, this complex mix between the individual’s preference, the clinical need, and risk level.

Interview 17, psychologist

Quotation 69:

I would try to bring them in to the TOGETHER study, and also see them as a clinic appointment. So, in that way it was quite challenging for me, rearranging the clinics. Doing some research, you know, following up, and having some time like 2 weeks before, to really sort of organise everything and change appointments. And ring them, and trying to get in touch with them, so ‘would you prefer to come to this, and we’ll see you at the same time when you come to TOGETHER study’. [. . .] So, contacting them. Just getting in touch with them. Leaving messages. And getting them to attend. [. . .] But obviously you need the manpower to do all of that. You needed the time, you needed at least 2 weeks to prepare.

Interview 26, DSN

Quotation 70:

[. . .] in a way it was easier, I didn’t have to organise the clinic. But then I would find that if someone came today for the TOGETHER study, they wouldn’t attend the appointment the next time.

Interview 26, DSN

Quotation 71:

[. . .] people from first group couldn’t make it that, you know, particular session they wanted to join the second or third and then, you know, keeping the register going and keeping a tab on who went and when, you know, that was quite messy.

Interview 2, DSN

Quotation 72:

[. . .] just the booking process has created such a problem and how we created the list [for group clinics] because, you know, there’s just no infrastructure within the trust to do group clinics so we need to do some work around how we set up a group clinic, how the patient’s informed, how is the data captured.

Interview 18, diabetes consultant

Quotation 73:

[. . .] for the first session I did I wasn’t quite sure how much to prepare, so whether to keep it just completely blank and do questions and answers or come with something already done and some activities.

Interview 3, dietitian

Quotation 74:

I think because it was the first time I’d done anything like it and I was a bit, I felt quite worried about not really understanding, not really knowing because I was new to it and I didn’t want to say anything that seemed judgemental or, where I seem like I was making an assumption about what people would do.

Interview 6, sexual health advisor

Quotation 75:

[. . .] there wasn’t any relation to diabetes that would sort of help, or what you could do about it. So unfortunately I didn’t find that really helpful [. . .] It wasn’t sort of like well thought out.

Interview 14, patient 9

Quotation 76:

[. . .] it was the third session that I did that worked really well where we had the girls and they split up into separate groups and they planned their meals so they spoke about what they, within themselves, spoke about what they currently eat and then came up with ways that they can make it a bit better.

Interview 3, dietitian

Quotation 77:

[. . .] if they’re doing like a presentation, I would ask them to send the presentation to me and I will look through it and make sure it’s something that would benefit the participants [. . .] you don’t want to get them sort of bored by anything, you want to keep them sort of alive and asking questions.

Interview 26, DSN

Quotation 78:

At the end getting feedback, deciding on the next topic, what they would like and then coming to the office and entering all the details on the database [. . .] if there was an issue raised it would be liaising with the relevant clinician.

Interview 2, DSN

Quotation 79:

[. . .] you really need to understand what are their interests, what are their troubles, you know, to actually win their confidence [. . .] in the beginning I spent a lot of time going through learning about each one of them, their history.

Interview 20, DSN

Quotation 80:

My challenge has been that I know a lot more about them but not knowing how to, I don’t want to challenge them in a group because I want them to come back. Because with the young adults, it’s bad enough with the adults but with the young adults the moment you say something that’s it they don’t want to know you.

Interview 1, DSN

Quotation 81:

[. . .] anxiety is probably there both for the people who are delivering it, and the people who are participating in it. As these programmes mature, and then there are more people convertible with the idea of learning as a group [. . .] they may be able to discuss more issues in the open. And they may be able to say ‘my HbA_1c is 100’, so with the same tone as somebody saying ‘my HbA_1c is 48’.

Interview 25, diabetes consultant

Quotation 82:

So, you don’t want to embarrass them if they’ve said that they eat something, or they do something and they’re with a group, you don’t want to embarrass them in front of the people they’re with, but you still have to give the information. So maybe like offering advice and asking about if they want certain advice rather than just going out there and giving it.

Interview 3, dietitian

Quotation 83:

I focused on two main activities, but they had kind of little mini steps within them. And one was very much based on scenarios. So, scenario enables people to talk about difficult things, difficult content, without having to expose a lot of their [um], their emotional needs or their difficulties directly [. . .] I didn’t come out saying ‘right, denial is very important for you to know about’, it came naturally through the scenario. But I was well aware that that was something that they had talked about before, and it had been quite a contentious issue.

Interview 17, psychologist

Quotation 84:

But we gave them space to open up because we also realised that they are new, all three of them. We need to give them time to get to know each other.

Interview 2, DSN

Quotation 85:

I think when the one young adult’s mum came, I found that quite difficult to manage. I’ve met her before, so I did know her, and I don’t know if, if we hadn’t met before she would have spoken less or if she’d have spoken more, I don’t know. But that was quite difficult to manage from a group perspective, in she was taking the lead and she was asking because she had diabetes in pregnancy herself, so she had a lot of diabetes-related questions.

Interview 3, dietitian

Quotation 86:

I do think actually the delivery of a group where six or eight people turn up is actually very different to a group where two people turn up. You know? You have to do very different things. And so I think it does definitely present challenges to us.

Interview 8, diabetes consultant/project principal investigator

Quotation 87:

[. . .] it has been a quite rewarding and challenging experience for me, as well. So, every time whenever I say something, I’m questioning myself again internally. So, is that too much for them? Is that too little for them? Or is it reaching everyone? And if somebody’s not asking questions, how should I prompt them to ask questions? Or would that make them more anxious? Or should I kind of take a step back, and? So, how should I kind of interact with them?

Interview 25, diabetes consultant

Quotation 88:

[. . .] the mood, the kind of dynamics, is something that you are attuned to, and you need to be working with within the session. So, how you include people, when they can be splitting, when it can be one person speaking or – and it’s a very dynamic process.

Interview 17, psychologist

Quotation 89:

I’ve only had one young adult, ‘Why should I be sitting listening to other people, I’ve got my issues I need help with’, there’s that element of competition, ‘I have left work I have come here I’ve only got an hour in the car’.

Interview 20, DSN

Quotation 90:

[. . .] in some of the sessions there’s been a bit of a conflict, and conflict management can be quite tricky. And I certainly know that the nurse was quite upset about it after that and so that needs a little bit of help.

Interview 18, diabetes consultant

Quotation 91:

So they finished their session and then they said they were all heading home and then my clinic nurse stopped a lot of them and said you have another appointment and then they said ‘Oh but we’ve already done this’. So they attended my appointment but when they’re attending my appointment I found that in that group session they hadn’t, nobody had looked at their Libre readings and actually highlighted the problems, talked about what changes they needed to make to their insulin on the pump. Looked at why the sugar was high or low, so that session was more about their using the sensors and setting up the system to download the results but not much time had been spent individually for each patient.

Interview 18, diabetes consultant

Quotation 92:

[. . .] just the fact that the study itself has engaged with you know, a few of these young adults who weren’t well engaged before, or you know, were having poor experiences of care before – you know, the fact that we’ve done something a bit different with them and they’ve got on well with it, is a real positive.

Interview 8, diabetes consultant/project principal investigator

Quotation 93:

There’s lots of battles it’s not just HbA_1C we’re looking at, you know, whether [um] they, there’s an education component to it [. . .] the fact that they’re engaging, they’ve had a flavour of, you know [um] being amongst, you know, what it is [um] amongst their peers, you know, to be discussing about their diabetes [um] it’s a different way of looking at things other than the one to one.

Interview 20, DSN

Quotation 94:

If anything comes out of the TOGETHER study I’m hoping that they realise that, you know what I was giving myself such a hard time.

Interview 19, DSN

Quotation 95:

[. . .] all they know was – their parents telling them that ‘you’re not doing it the right way’, their doctor’s telling them the same [. . .] When they know that other people are also going through the same problems, then it starts making them feel less guilty. And then that [er] in turn will facilitate how they have the conversation with their clinicians. And they kind of open up. And they may [er] for the first time accept that they’ve not been taking insulin as recommended, or as advised.

Interview 25, diabetes consultant

Differences to the delivery of existing one-to-one care

Quotation 96:

The one to one is more – personalised, like scientific. [. . .] Where [the group clinic] is more like lifestyle based. Like it’s more about how to live with your diabetes, rather than just manage it [. . .] With the doctor, I kind of want to just get it over and done with really quickly, and then just go. So I wouldn’t, I don’t try to ask as many questions or I just forget.

Interview 27, patient 16

Quotation 97:

[In individual appointments] I just personally feel that I’m being judged. Or I feel like I’m a kid, and I’m getting told off again. And I just – me personally, I don’t like that feeling.

Interview 13, patient 8

Quotation 98:

So, with the one to one appointments, it’s – I would say it’s more of a professional atmosphere. And as a young person, you might not be I guess used to that environment very well. And the group clinic is quite a more comfortable atmosphere. More informal. And just I guess a bit more relaxing. It helps, just I guess, talking more. [. . .] I like to imagine that it makes it easier for us to, to turn up to the meetings, I guess. Because I know the individual ones, I know a lot of people haven’t turned up to those as well.

Interview 24, patient 15

Quotation 99:

Yeah I think they’ve got, I feel pretty comfortable because there’s more of us and so I had the cramp problem and then she said she also gets it and she told me about these tablets so I’m going to get.

Water.

Yeah, it’s good because I, when you’re one to one with the doctor it’s only you and what the doctor knows, because there’s so many of us now we can share our experience and hear other peoples’ experiences.

[some agreement].

I feel like the doctor doesn’t understand.

[some agreement].

Clinic 7

Quotation 100:

[. . .] also then the knowledge starts to come from a clinician, it starts sounding like a sermon. And they may forget it as soon as they leave the room. [in group clinics] that knowledge comes in an environment where they don’t perceive the pressure where they have to listen and nod their head. So it might kind of open out, and then they ask the right questions [in group clinics and in individual consultations].

Interview 25, diabetes consultant

Quotation 101:

I think one of the issues with our current clinical model for young adults is about expecting them to behave in a certain way, and conform, and be patients. And probably that encourages them not to tell us about you know, big issues that are affecting them [. . .] we’ve all experienced that when we’ve gone to the doctor. You know, where you feel, I don’t know, a bit patronised or a bit too scared to say something. Or [um] you know, that – inhibited in some way.

Interview 8, diabetes consultant/project principal investigator

Quotation 102:

[. . .] it’s far more likely that a group is going to respond to you to say ‘hang on, that’s rubbish, we’re never going to be able to do that’ than somebody is if they’re sitting opposite you one to one.

Interview 8, diabetes consultant/project principal investigator

Quotation 103:

So the group clinic I think – I feel like it’s more free [. . .] when I go to my doctor’s appointment, I sit there, they have a look at my sugar levels, they’ll tell me ‘OK, you need to improve on this’. I know I need to improve on it. But it’s, it’s very hard to. You know? And you say one thing, but actually doing it is completely different. And we try, I try to get it better. But it’s just sometimes it’s really hard. Things get in the way.

Interview 10, patient 5

Quotation 104:

So it’s easier than talking to your diabetic nurse who’s telling you what to do. But they will never actually know what you’re going through. Like, or how it is. Or, you know, if the insulin’s really working. Even though that insulin’s good, but it might not be working for me. Whereas somebody that’s also on it, she knows that they will – so the boy or the girl would know exactly how it is.

Interview 9, patient 4

Quotation 105:

So, at my clinic appointments, I would say maximum half an hour, sometimes I do run over, but in the group session, because everyone has different questions and it’s a lot longer as well. So, I think he got more out of the group session than he would do in an individual appointment.

Interview 3, dietitian

Quotation 106:

[. . .] some people might not manage their blood levels, the right way. So they might feel a bit inconvenient, or embarrassed about that. So I don’t think they want to present themselves to other people. If that makes sense.

Interview 16, patient 11

Quotation 107:

So results of your tests would probably be the only thing where I would have said – probably want some more privacy.

Interview 14, patient 9

Quotation 108:

I don’t know whether there are certain topics that lend themselves more easily to groups so like with the paediatric group we are told we’re going to be talking about, the psychologist wants to do a session on just wellbeing and [um] just mental and psychical wellbeing.

Interview 18, diabetes consultant

Quotation 109:

you’re looking at blood glucose profiles each visit, each visit. Now, you can’t do that in a group clinic, look at individual ones, it’s just not going to work. You’re looking at the blood biochemistry, you know exactly who’s had what done. And you’re looking at the kidney function, liver function and whether they’ve had their urine done for [inaudible] ratio what their last HbA_1c was. I do look at those kind of things to know, understand where they are at the time of consenting. But these are the limiting traits.

Interview 1, DSN

Quotation 110:

[. . .] if they were, in the group clinic if there was eight people there and the nurses had to adjust the insulin for each person and spend time explaining. Then one of two things could have happened, either everybody around would have found the readings interesting could have learned from that experience or they would have got completely bored, saying it doesn’t matter to me why am I sitting here, so we don’t know what, what would happen.

Interview 18, diabetes consultant

Quotation 111:

[. . .] when you have a one to one with your nurse, she can analyse your readings, have a look at them, explain to her what this jump might have been or why you got this hypo. You know, ask any questions that you might have. She can suggest correction doses, or anything else. The problem with that is, that if you were to do that in a group clinic, you’re kind of wasting everyone else’s time.

Interview 15, patient 10

Quotation 112:

But if they’re having more group clinics, then there should be less doctor’s [appointments]. For example, like I could be the one calling them up, saying you know, ‘I need to talk to you about something, can we have a one to one’.

Interview 10, patient 5

Quotation 113:

But I feel like I’m more able to come to the group clinics. I feel more confident and comfortable coming to the group clinics than going to the one to one sessions with my nurses [. . .] I personally don’t know what I’ll do if it stops. I just feel like I would be completely shut off with the whole diabetes thing again. Honestly.

Interview 13, patient 8

Quotation 114:

I asked him if he would come back and keep an appointment and he said no, and he said ‘no I know how to get hold of you if I enter problems but I don’t want to keep coming to see you in clinic regularly’, which is very odd.

Interview 18, diabetes consultant

Critical staff roles: the youth worker

Quotation 115:

What I’d like you guys to do, and I know we haven’t had the chance to say our names, so if you just say your name, and what I’d like you to do is think of a unicorn, everyone know what a unicorn is? I want you guys to think of a unicorn and design it, so if you had a green unicorn how would you have it, what would you want it to do, what superpowers would it have? Use all your imagination, think of something. I’ll give you guys about 30 seconds.

Clinic 1, CMH

Quotation 116:

[The youth worker] was really, really good when it came to ice breaking. We had two different activities, one of them was the fruit and the lion, the other one was chair, we actually were physically swapping chairs. I can’t remember what it was called but yeah. That did take quite a bit of time, but we didn’t finish until 6.50 pm. And the boys they were very happy.

Interview 2, DSN

Quotation 117:

[The icebreakers and youth worker] relaxes the setting a bit more, it’s less formalised [. . .] You get to have like a fun activity, or do something in a group together before we start off, so you get introduced to each other [. . .] you get to do things that you don’t have to think about diabetes.

Interview 14, patient 9

Quotation 118:

[The youth worker] is absolutely amazing. And everyone gets on with him. You can’t fault him at all. So, when he brings up these icebreakers, kind of gives the group an opportunity to get to know each other a little bit and start talking. I don’t have that problem, because I can talk to anyone, to some extent. But there are some people that obviously can’t. And so it’s good for them.

Interview 15, patient 10

Quotation 119:

I think, he’s been fantastic because when we start out it’s not about diabetes, and he’s brought that outside elements of, he admits that he doesn’t know anything about diabetes so he’s just one of them almost [. . .] in the one-to-one sessions when we do clinics, we all have, we all just get straight into the diabetes whereas with the youth worker he just relaxes things and make, takes that step back so that they know it’s a bit different to what they’ve done before.

Interview 3, dietitian

Quotation 120:

I started off with truth or false, I find that, initially it’d be a very, very good game because you get to know something about each other, that’s true, and it’s usually do something fun or something interesting. So, it already sets a fun, energetic mark and I think an icebreaker should always have a couple of getting to know something a bit more about that other person, because you’re starting to now break boundaries and you’re going to start trusting each other and talking.

Interview 7, youth worker

Quotation 121:

So, I think our team never worked with a youth worker, is number one. And having a youth worker just setting the agenda. So our nurses and dietitian – it took the pressure off them, and helped them to focus just on the topics that they had to discuss. And then it made the whole atmosphere very lively, and interactive, even the clinicians were feeling as part of the team, contributing to it [. . .] if you have a youth worker as a facilitator, that changes the role of the person. But if you don’t have, then you need to integrate both the roles, and then that role needs some training.

Interview 25, diabetes consultant

Quotation 122:

So, for me, having [the youth worker] there was a little bit of release. So, someone else can take – you know, I’ve done all the preparation, I’ve organised everything. And during that session, I can just sit down, I can listen, I can look at all the participants, I can see what sort of triggers them, what got them excited, I can observe what’s actually going on a bit.

Interview 26, DSN

Quotation 123:

What I’d like, you guys, to do is, let’s do some ground rules for us, if that’s OK, just while we’re here. Everyone seems really sensible, I’m sure we’re going to have no issues, but just as part of our group I think we should have some rules for each other, just so we can respect each other’s wishes, or whatever they are. We’ll put a few up, if everyone gives one or two each, and I’m sure that will probably be the last we see of the ground rules, but as long as everyone respects them. Superb, anyone want to shout out any to me?

Clinic 1, CMH

Quotation 124:

[young people will think] ‘if these guys don’t finish on time, I’m going to be late, so I’m not going to these guys because my other things is more important’. So, I think finishing on time, not matter how exciting the conversation, let the rest of the group go. [. . .] They might have parents waiting outside, their phone’s ringing but they don’t want to say in front of their peers that they’re getting picked up at this age by a parent. So much goes in play here, so much.

Interview 7, youth worker

Quotation 125:

. . . the funding for a youth worker, and finding a youth worker to run the service throughout, and everywhere – it is an aspirational thing. But I don’t think it will happen everywhere.

Interview 25, diabetes consultant