Developing good value and life-stage oriented care

Introducing group consultations to the diabetes service in the two hospital implementation sites was not straightforward and required careful local experimentation. The appropriate balance between clinical and educational content became a matter of debate, as clinicians were concerned that the typical group consultations format (with standard one-to-one consultations in a group context) would alienate young people who already had low levels of engagement. Instead, they opted for a flexible approach primarily prioritising group interaction on clinically relevant topics, with individual needs addressed indirectly as part of group discussion, rather than replicating one-to-one consultations in the group setting. This also meant that group consultations were not implemented as a substitute to individual clinics but were used purposefully to augment and re-distribute care; when discussing with peers, young people opened up more than they would with clinicians, which resulted in better recognition of their needs and changed the focus of subsequent one-to-one consultations:

‘…they kind of open up. And they may for the first time accept that they’ve not been taking insulin as recommended, or as advised’ (Interview 25 Diabetes consultant)

Experienced diabetes specialist nurses and other members of the implementation team worked closely with a youth worker, whose contribution was instrumental to developing age- and life-stage appropriate, relationship-based group consultations. The youth worker participated actively in sessions, for example delivering ‘icebreakers’ as a group formation activity and contributing to discussions in a way that would level power dynamics, signifying that group consultations focused on young people’s priorities, rather than purely meeting service or cost-efficiency targets. Clinicians valued youth worker support which allowed them to focus on clinical management without juggling multiple roles for which (in many cases) they had never been trained for (such as facilitating groups of young people).

A typical clinic would start with introductions and an ice-breaker, followed by setting ground rules (see Table 2). Depending on the focus of the session, one or more specialists would join, such as diabetes consultants, dietitians, or psychologists. Topics included healthy eating, blood glucose sensors and measurements, exercise, psychology, sex and healthy relationships, hypos and blood tests, diabetic eye screening and annual review information sessions, sex and healthy relationships, and women’s health, among others.

Although clinicians originally intended for young people to be allocated to specific groups meeting repeatedly and developing long-term relationships throughout the programme, in practice, this proved difficult to sustain and group composition became more fluid. Regular attendees particularly welcomed new participants joining the clinics so they could keep learning from different experiences, but groups also benefited from a certain level of consistency to increase connections between members. The youth worker helped in building affinity quickly between young people who had never met each other so they would open up in discussions and feel supported. At the end of each clinic, participants provided feedback and suggestions for improvement in sessions facilitated by the researcher or the youth worker after clinicians had left the room; this was important for ongoing service co-production (alongside dedicated co-design sessions described elsewhere [30]) to continue meeting patient needs and providing young people with a sense of ownership over this new model of care.

Key challenges in the implementation and delivery of group consultations: staff experiences

Delivering group clinics involved working with uncertainty and managing multiple interdependencies across diabetes care pathways. It was not simply a matter of providing individual care to multiple people at the same time. Group consultations required a different degree, mode and depth of preparation, and engagement by clinicians and young people alike. The transition was gradual and required changes in established practices but also surfaced and challenged deeply embedded ways of thinking about patient-centred care provision.

Table 4 provides examples of how complexity underpinned the work required to deliver group consultations, including the challenges staff encountered. There was little scope for standardising the processes followed, especially at the beginning, when diabetes specialist nurses were learning through trial and error. Yet, the need to manage uncertainty continued throughout the programme; each session had to be treated as unique and required comprehensive preparation to meet changing patient needs and address all eventualities (unpredictable participation, parents attending, etc.).

Self-organisation underpinned efforts to informally co-ordinate between different clinicians providing one-to-one and group care to young people, in terms of selecting participants for group clinics, understanding their needs, inviting the right experts to contribute, and managing interdependencies with other care processes (e.g. diabetes education, individual appointments) (Q3). In-depth clinical and relational knowledge about young people mattered when deciding how to bring them together and facilitate the sessions so they would benefit most; this knowledge needed to be collectively accumulated and negotiated between different clinicians involved and drawn out of medical records. Informal, improvised, and spontaneous interactions between clinicians enabled ongoing co-ordination, largely driven by the efforts of the diabetes specialist nurses, but also other staff involved (e.g. diabetes consultants, research officer). Other practical and logistical challenges ensued, such as securing seminar rooms, adjusting booking processes, and maintaining continuity with the rest of the diabetes service (Q5).

Formal and informal opportunities were needed for reflection and sense-making, and to support learning within and across implementation sites (e.g. implementation and project meetings, co-design, training sessions). Development of adaptive capability became important for clinicians who were delivering a new model of care highly dependent on human relationships. Group clinics involved the dual challenge of delivering good clinical care and education, while facilitating a group of young people. In some cases, it was important for clinicians to engage in emotional work to support groups where conflict and competition emerged and to ensure outcomes remained positive (Q12). Health professionals drew on their skills consulting with young people, but also attended group facilitation training, held regular debriefs between implementation and clinical teams for ongoing adjustment of the model, and derived significant learning from on-the-job trial and error.

Attendance and young people’s motivations

Despite significant effort, mean attendance was relatively low at 32% for site A and 33% for site B—a challenge already familiar to those delivering young adult services. Local teams had to work creatively to make sessions worthwhile regardless of how many young people ended up attending. Despite suggestions that a ‘good’ session should include 6–8 patients, in practice, the ‘right’ number largely depended on the focus and facilitation mode of each session (e.g. more young people could meaningfully participate in a session about exercise compared to psychology). Larger groups did not always guarantee high levels of contribution; there were successful groups with as many as 4 young people who identified with each other and shared openly.

[…] it seemed to be around sort of three, four, five we were getting [to attend], even though you know, we invited more than twenty patients, within a good amount of time. So I think just trying to make sure a lot of people, or as many people as possible would attend, was the biggest challenge. (Interview 29, Diabetes Specialist Nurse)

An average of 4–5 young people attended each group consultation at both sites. Higher attendance rates were recorded when a small group of selected young people were invited for a specific care-focused intervention, such as flash glucose monitoring follow-up (range of 83–100% in three sessions). Variable attendance rates were observed at broader educational and self-management sessions (e.g. psychological health, healthy eating), especially when there was an open invite to all young people recruited at each site (range of 0–60% in 25 sessions). As group clinics continued, attendance was mostly from those who had attended previous sessions, suggesting group consultations appealed to and continued to attract a specific set of young people (5–6 young people attended 5–10 sessions in site A and 3–4 in site B), but the majority only attended a small number of sessions.

Some young people expressed feeling motivated to participate in group consultations, mainly to meet others with diabetes in their age group. However, others were unable to fit group consultations alongside standard, individual diabetes care and other responsibilities (such as family, education, employment, social life). They also expressed feeling ambivalent or in ‘two minds’ about this new service model as they did not know what to expect or did not feel ready to engage with their condition; some overcame initial fears although others chose not to participate at all.

But yeah, it’s like having a group clinic is so much nicer, in order to meet people. But then on the other hand, I think because you don’t really know them, you don’t have that personal connection with them, you don’t really want to voice out everything that you’re going through. Do you get that? I’m a quiet person, like I wouldn’t tell people what I’m going through if I don’t really know them. So I was in like two minds. (Interview 12, Patient 7—never attended)

If I’m being honest, at the beginning, I didn’t want to come. I did, but I didn’t. I just like – oh, when is it going to be, is it going to be really long, I might not like it. But I still came. And I liked it. I was like ‘okay, this isn’t what I was expecting’. I was not expecting it to be so laid back. I don’t know. It was really comfortable, the setting. (Interview 10, Patient 5—regular attendee).

Not all young people had disclosed their diabetes in their communities and they were unsure how to share deeply personal experiences. There was also an underlying resistance to supporting a new consultation mode if this would mean reducing individual appointments for cost efficiency.

Differences between attenders and non-attenders in implementation sites

In Tables 5 and 6, we present baseline characteristics of the 73 young people recruited in the two implementation settings, comparing those who attended one or more group clinics to those who did not attend any group clinics at each site (further comparisons with participants recruited in control sites are available in the detailed project report [30]).

At site A, comparing participants who did (N = 23) and did not (N = 27) attend any group clinics, there were no significant differences in sex, ethnicity, deprivation, speaking English as a first language, type of diabetes, or use of technology within the last year (Table 5). Those who attended were on average diagnosed at a younger age (11 vs. 16 years) and more likely to have attended group education sessions in the past (39% vs 7%), with borderline statistical significance (p = 0.033 and 0.053 respectively). There were no statistically significant differences in these variables when comparing attenders (n = 14) and non-attenders (n = 9) at site B.

Comparison of attenders and non-attenders at site A showed no statistically significant differences between these groups when comparing baseline clinical characteristics and questionnaire scores (Table 6). In contrast, attenders at site B had better glycaemic control (mean HbA1C 68 vs. 98 mmol/mol, p = 0.023) and had attended 80 vs. 50% of planned appointments within the previous year (p = 0.009).

Young people’s experiences in group clinics

Young people who attended group clinics (especially repeat attenders) discussed their experiences as predominantly positive: they felt better understood and supported, learnt new things from peers and clinicians, and were better able to normalise diabetes self-care. Only in a few instances did young patients express (initial) reluctance to share clinical details or found peer comparison challenging; in these cases, internal dynamics required careful management by clinicians.

Group clinics provided the opportunity to discuss emotions and frustrations with others going through similar challenges. Young people found peers could understand and identify with their experiences, which made them feel less isolated. They felt better able to engage in open discussion as they gained encouragement from each other when they started to realise how all were struggling to follow clinical recommendations:

F1: 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? F2: I’m not going to lie I haven’t been really carb counting. F1: 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? F2: (indicates agreement) (Site A, exchange between female patients in Clinic 2)

Being able to explore emotional challenges of living with diabetes was repeatedly mentioned as a key aspect of positive experiences in group clinics, compared to individual appointments, where young people expressed reluctance to voice their difficulties:

The one-to-one is more personalised, scientific. […] Where [the group clinic] is more lifestyle based. 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)

One of the young people with type 2 diabetes did express feeling alienated initially, in a clinic where everyone else had type 1 diabetes, but then explained: ‘it was [a] very welcome [environment] so, feelings of being left out didn’t last too long to be honest’ (Interview 24, Patient 15)

Another participant suggested that they felt less comfortable with individual appointments because they perceived them as ‘professional’—which at their life stage seemed alienating, as they were unsure how to navigate the rules of engagement and match them with their own priorities.

Social and situated learning emerged through a combination of patient input and clinical advice (e.g. on alternating injection sites, ketone testing or avoiding hypos), carefully facilitated by the diabetes specialist nurses who ensured young people gained insight without feeling judged or criticised. Learning emerged both for those newly diagnosed and for those diagnosed at a younger age, who had been looked after by their families and were only just beginning to learn how to care for themselves independently. Clinicians were surprised that young people had not already acquired this learning through individual appointments on similar topics.

Patient participants talked about how group discussions with peers helped them think about their diabetes differently and normalise their experiences through getting to know how others approached their self-care. This even resulted in some feeling more confident and comfortable with their condition to the extent they started disclosing to their workplace and friends:

[…] 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. (Interview 13, Patient 8)

There was, however, some reluctance to share clinical details considered private (e.g. glucose levels) or have test results displayed on the computer screen for discussion. Others were not always prepared to discuss self-care aspects they were struggling with or to manage a group discussion that might have led to sharing beyond what they were comfortable with, so chose to control their contributions. For those newly diagnosed, comparison with peers was not always motivating, especially when they were comparing themselves with others doing worse:

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)

Costs of group consultations and health care

The average staff costs for setting-up and delivering group consultations were similar across the two implementation sites (£572 for site A and £545 for site B) (Additional file 1: Tables 1a and 1b). The average cost of clinic per participant was marginally higher in site A (£158) compared to site B (£127), due to poorer attendance in the former (average number of participants was 3.7 for site A versus 4.5 for site B) (Additional file 1: Table 2). The study participants attended on average 3.6 out of 5.9 scheduled appointments per year, including consultations with a diabetes doctor, diabetes specialist nurse, dietician, and psychologist. The average annual cost of scheduled care was £723 per patient per year. The study participants had on average 3.9 unscheduled contacts per year including A&E visits, hospital admissions, and contacts with general practitioners and diabetes specialist nurses. The average annual cost of unscheduled care was £2566 per patient (Additional file 1: Table 3).