How is the role of the DCT understood?
In this section, we present an analysis of how DTCs, patients and other HCPs perceived the role and work of the DCTs.
The views of DCTs
DCTs generally narrated their role in hierarchical terms. One described her work as supporting nurses and dieticians, but did not mention doctors:
CT01:The role I play in diabetes service is I support the nurses and the dietician basically. I go out to patients … who have started insulin and I follow in sort of ten days later and we go through a protocol, depending on the patient I go back two or three times, or sometimes it’s only just the once or twice. And just go through a protocol of what’s needed, if the device is working, how much insulin are they on, blood sugars, checking things like that. But we also go through diet, exercise, tablets, other medications and just wellbeing really. So it’s a really supportive role to the nurses and the dietician.
When asked about the wider network of care, DCTs saw their work as linking patients to nurses and doctors at local surgeries, and other members of the integrated care team, as well as family and friends. One DCT also spoke of the less visible people in the social network of care: administrative staff, neighbours, social workers and other patients.
DCTs described their role as one of providing validation and reassurance in relation to decisions made by doctors or nurses, particularly changes in treatment regimen.
INT: Okay. So they might have been told at their practice or by someone else that they’re about to change things so they want another opinion?
CT01:Yeah. Or they’re, because half the time I’m in there with them when I do change it but if DN03’s been in say for a visit or DN04, they’ll say “well they changed me, what do you think?” you know, and I’ll say “well I think they’ve changed that for the right reasons” and we’ll go through all the reasons why they’ve done that as well, so yeah. So they do, even though I can’t change medication they will involve you in that which is, you know, I suppose through it’s trust isn’t it? They trust you, yeah […] But I do think they see, they want you as kind of a friend, a lot of them, a lot of the elderly I think see you as like a daughter or something, or granddaughter […] Because they’re quite lonely I think, that’s what it is.
Validation and reassurance relating to treatment decisions, in this account, is entangled with trusting, friendship or family-like relationships, which the DCT attributes to loneliness.
The DCTs also described their role as helping to explain decisions where information is either inaccessible or difficult to understand.
CT02:A lot of the time, where I work in the Town1 area, it’s often because people are dyslexic, often because they don’t trust their doctors’ practice because they use very big words that they don’t always understand and they don’t want to feel silly. And often because they’re housebound and can’t get out, so you going to them, they see that as you doing them a big favour and a lot of them would never go to the surgery, so okay, maybe the information has been there, but they haven’t been able to access it and a lot of my patients aren’t computer-literate.
In this account, the DCT presents the role as one of translator or explainer of biomedical discourse, with the intention of helping patients understand the aspects of care that are opaque to them.
Patient views of the DCTs were overwhelmingly positive and repeatedly framed relationships in the terms of friendship:
P13:CT01 is all I need really, well she can only do so much but on the other hand she’s somebody that I can make suggestions and she’ll say “well yes or no”, you know… Very relaxed because I can talk to CT01 about anything and we are friends, she feels the same way, you know.
Alongside friendship, as P13 describes, the DCTs were also treated as advisors who could help a patient explore potential treatment options.
Alongside friendship, the DCTs also provided continuity when other HCPs moved onto new positions:
P19:CT01 came in one day and she said “DN04’s gone”, I said “so I hear”, one of the nurses or doctors or something told us […] And it really upset me that because I thought she was so nice and we got on so well. She could have told me the last time she was coming that I shan’t be coming again, you know, just to simply drop off like that is… But then I suppose it’s like everything else, a rat race, everybody for themselves. I don’t like that sort of attitude but there you go.
Patient narration of the DCTs focussed on their roles as friends and maintainers of continuity. Not only did DCTs provide a space for talking about ‘anything’, they also offer familiarity at times when routines of care were altered.
The views of other DICI HCPs
During interviews, the majority of the DICI team mentioned the DCTs (or as Health Care Assistants (HCAs)) when asked to name those involved in DICI diabetes patient’s network of care. One nurse described the role of the DCT as delivering long-term monitoring and support:
DN03:And the Care Technicians as well, I mean they’re absolutely a great support, they will see patients after we’ve commenced them on insulin, following their protocols to offer on-going education and support as well. I mean they do an amazing job with patients, like podiatry advice and regular weighing as well, teaching people to test their blood with blood glucose meters.
INT: So quite practical sort of advice there?
DN03:Yes, because as again they’re in a privileged position when they go in regularly and it’s continuing the on-going education.
In this nurse’s account, the DCTs are positioned as both ‘a great support’ and as inhabiting a ‘privileged position’: they provide reinforcement and longer-term engagement than nursing staff can offer, and also build strong relationships by ‘go[ing] in regularly’.
Another perspective on the DCTs came from one of the registrars who worked in the DICI:
DR04:The team that I work with… so essentially it’s myself who’s the doctor, obviously the consultant, DR02, we’ve got diabetes specialist nurses, and, with me, those who primarily work in the community, then we’ve got community dieticians and also community health care assistants [DCTs] as well. The health care assistants in the community are, I feel, different to the ones in the hospital, um, certainly the ones that I work with have a bit more of a role in terms of follow-up and supporting patients to give them support between clinics.
In this account, the registrar acknowledges and points to a different level of DCT/HCA engagement with patients than the equivalent hospital-based roles are afforded.
What do DCTs do?
Analysis of observational data produced three themes through which we present the work done as part of the diabetes care technician role: navigation; conversation; and negotiating integration.
Within the DICI, diabetes care was provided by a multi-disciplinary team in multiple settings (e.g. GP practices, community clinics, and the regional hospital). Patients who had recently commenced insulin treatment or changed their pill-based regimen, found it difficult to get to care providers (due to impairment, social and/or economic related reasons), or had a history of non-attendance at clinics, were visited by a diabetes care technician. The area covered by the DCTs offering this care necessitated a variety of forms of mobile working.
CT01’s vehicle is her office for the day and her diary and mobile are out when I get in. She’s checking voicemails and trying to decipher a message. There isn’t particularly good reception, making the sound cut-out during the message.
The difficulties of delivering care on-the-move in a rural setting, as exemplified by the lack of mobile phone reception in CT01’s mobile ‘office’, contrasts to the more predictable nature of a GP surgery or hospital. While a ‘static’ HCP may need to learn the hallways of a building, community-based professionals require knowledge of a wider (techno)geography, including where you can and cannot get mobile reception.
As well as a need to navigate the geography of mobile phone reception in the areas they operated in, the DCTs also have to traverse social terrain. For example, when a patient is not at home at the time of a scheduled appointment, some DCTs know where to ‘find’ their patients:
This patient has a “lady-friend” (or ‘girlfriend’) who lives close-by and he usually has lunch there one day a week. He’s not at home when we arrive, but CT01 knows where he’ll be and pops to his lady-friend’s house a few doors down to see him. They walk back from the house together towards the patient’s house.
In this observation note, we see that the DCT deploys knowledge of the patient’s social connections, which were shared freely in earlier appointments. While formal operating procedures may position such a maneuver as an invasion of privacy, the DCT made a tactful judgement based on knowledge shared in previous interactions.
While such judgements are not without risk, DCTs were observed to take privacy very seriously, noting that protecting patient confidentiality while working in the community can be a major challenge.
[CT02] says the care technicians arrange appointments to ensure visits within close proximity have some time between them, so patients are less likely to see them entering a neighbour’s house. Another aspect of protecting patient anonymity is their lack of uniforms. By entering the home without a nurse’s uniform, they are less likely to be identified as a health care professional.
From a logistical perspective, it is counterintuitive to visit patients in any other order besides the shortest route, but in communities where diabetes can be stigmatised (and patients blamed for lifestyle choices which are perceived to contribute to their condition), the DCTs try to prevent the possibility of such unintended exposures.
Observations of DCTs at work suggested that the community-based nature of their practice requires multiple competencies that can be captured with the term ‘navigation’. Besides the physical geography of locations and routes, the role requires navigating technological, social and ethical spaces.
Conversational exchanges between DCTs and patients play an important role in how diabetes-related matters are discussed in their interactions. Sometimes exchanges are very brief and other times lengthier. These exchanges cover topics including personal matters such as a patient’s family and pets, the people the patient is in regular contact with, and broader local topics such as a doctor’s new beard. Conversation between the DCTs and patients often begin with a ‘catch up’:
DCT01 ‘catches-up’ with the patient, as she has done with all her patients. For about ten or fifteen minutes they chatter. They discuss the lady’s son-in-law who has been diagnosed with diabetes and how she is giving him advice on what to do, including jokingly scaring him about how awful it is. The conversation eventually turns to diabetes with DCT01 changing tack to the effect of ‘I suppose I better ask you about your diabetes, now we’ve righted all the wrongs with the world’ and DCT01 asks how she’s getting on with her medication and sugars. The patient is having no problems and the conversation soon returns to more general chatter. The patient gives DCT01 a marrow and some courgettes (from her vegetable patch) and gossip magazines she’s finished reading.
Such conversations were typical in the observation data. Through regular and linked interactions, the DCT and their patients build a rapport such that family can be discussed, vegetables exchanged and the ‘wrongs’ of the ‘world’ can be ‘righted’.
Informal conversations during visits were not just trivial ‘chit-chat’. In the following encounter, the DCT sees a patient who has stopped taking their medication:
Like old friends, they discuss the gardening and whether the lady’s son would be around to help. The lady seems annoyed with her son, a farmer, who hasn’t been around to see her recently. CT01 suggests he might be busy with the farm. After some polite chatter, CT01 broaches the subject of her diabetes and asks how her medication is. The lady says resolutely she’s stopped taking her medication. CT01 asks, with a hint of surprise in her voice, whether she’s told the doctor. “Why would I want to do that!?” CT01 asks which ones she’s stopped taking. “All of them!” CT01 starts to ‘scroll through’ all the medication she’s on. (CT01 seems to already know them all by memory.) CT01 asks if she can see which medications she’s on and goes to the kitchen to fetch boxes of pills. The lady says she has taken her blood pressure tablets “when she remembers” but stopped the others. CT01’s reaction is a combination of calm but concerned, with some use of light humour in response to the patient’s jokes. The patient seems not to want to discuss why she’s stopped taking her medication and tries to make a joke of everything CT01 says, often looking to me and winking as if she enjoys winding up CT01. CT01 allows her to joke for a bit, but then tries to steer the conversation towards a more serious tone, saying she’s worried and wants her to stay healthy. CT01 says she thinks it’s because she’s lonely, and the patient somewhat agrees, suggesting there’s nothing to do now. (This is the only ‘serious’ moment during our visit.) CT01 says she thinks it’s been difficult since her neighbours moved away and the patient says she’s considered getting another dog.
While a strict biomedical perspective might see this conversation as a case of ‘non-compliance’ or failure to ‘adhere’, there are clearly other issues going on for the patient that influence her decision to stop taking her medication: frustration with a son; a need for humour; and the loss of the social contact provided by friendship with established neighbours. Through such exchanges, the DCTs are able to both support their patients as they narrate their lives, while at the same time addressing the agenda of diabetes self-management that is the formal basis of their interactions. Without CT01’s careful negotiation of the multiple concerns that are ‘live’ for the patient, the issue of medication taking may remain concealed.
The DCTs observed in the DICI invested time in understanding their patients’ lives, gathering detailed information about social networks, interests and concerns. While medical histories are vital for good care, they can be complemented by personal histories, often in ways that augment medical care:
[CT02] had been visiting that patient with one of the nurses on the team and it took a few visits but they realised she was sleeping in the living room. She was getting up at 3am to do housework, making her sugar levels erratic. At first they tried to encourage her to stay in bed when she woke up. They eventually found out she had been a shiftworker and changed her doses to mimic this pattern and things had improved since then.
The conversations between DCTs and their patients provide the patients with time to uncover biographical information that can inform care, such as past work routines or shifts in social engagement (absent sons and departed neighbours). These exchanges also offer the chance for DCTs to maintain relationships with those who have no current problems with their diabetes control, but may in the future.
Observational data suggest that one of the most significant aspects of DCT practice within the DICI was the construction of ‘bridges’ between patient and HCP perspectives on treatment.
As we enter the house, we walk through to a large sitting room containing a settee where the patient is sat, surrounded by blankets and pillows. She looks unwell, ‘full of cold’. CT02 asks after her health and the patient says she is sick and feels awful. CT02 asks if she’s been to the doctor. Patient: ‘Why would I do that? They’ll just give me an antibiotic which will give me cystitis.’ CT02 pleads with her to go. The patient resists. Patient: “I’m not seeing a doctor”. CT02 asks after her children and what they think about her not seeing the doctor. The patient looks knowingly at CT02, implying they have discussed the children previously. I imagine the children must worry about their mother. CT02 strikes a ‘deal’ with her asking her to see the doctor if she’s not feeling better in two days, after some good rest. The patient reluctantly agrees.
This exchange illustrates the resistance some patients exhibit towards HCPs. The patient believes the only help the doctor can offer would be antibiotics, which she feels will cause her additional pain (cystitis). Importantly, the patient’s disclosures – e.g. “why would I do that” – indicates that her judgment of ‘doctors’ does not extend to the DCT. Although harder to avoid than an appointment at a clinic, the patient does have the option of not answering the door, should they not wish to see the DCT. In this example, the DCT introduces leverage, in the form of the patient’s children, and uses this to negotiate a time point at which the patient will consult with her GP.
As well as negotiating the terms on which GPs are consulted, DCTs work with the wider goals and ambitions of the patient.
CT01 says her diabetes is now well controlled but she just wants to lose a few more kilos so CT01 only visits once a month to weigh her. CT01 says she realises some of her patients are managing their diabetes better but they sometimes utilise her to help with other health issues like weight loss.
Within the DICI, DCTs were able to assist with monitoring patients on insulin but were not authorised to advise on insulin adjustments and were required to check with DSNs before providing direction. The following example demonstrates a negotiation between a patient who trusted the DCT enough to inform her of a ‘hypo’ (hypoglycemia), but wasn’t willing to heed her advice regarding medication.
After we enter the car, CT01 checks her phone and receives a message from a patient who has had a hypo. CT01 calls her back and finds out more information. The patient says she had a 3.7. CT01 asks how she treated the hypo and the patient says she had something to eat and drink. CT01 asks her to check her blood sugars now while she’s on the phone. CT01 waits and the patient says she is now 8.7. CT01 asks if she’s due to take her insulin soon, and the patient says yes. CT01 asks the patient to wait before giving her next insulin as she wants to check if she can bring it [insulin unit dose] down from 14 to 12. CT01 asks the patient to wait again before hanging up. CT01 calls one of her community DSN colleagues and says she’d like to change the patient’s insulin. The colleague agrees and CT01 hangs up to call the patient back. When she calls the patient back, the patient has already administered her insulin. CT01 looks exasperated very briefly, and asks her to change her next doses and to write down the new amounts. The patient is very grateful for CT01’s help and CT01 asks her to call again if she has any more lows.
Negotiating the agendas of patients and their HCPs is particularly difficult when their trajectories are diametrically opposed. Recognising a want to die and rejection of treatment is not only challenging emotional work taken on by the DCT; for patients, these expressions are acts of defiance against the medical world. In the following encounter, the patient was over 90 years old and appeared very unwell.
CT01 introduced me to the patient, describing where I was and touched his hand while she was talking to him. CT01 said his hand was cold and asked if he wanted his hand under the blanket. They discussed how he’d been feeling lately and where his son was. The son frequently visited the pub, which upset the man as he felt his son didn’t care about him. He mumbled something to the effect of it wouldn’t matter soon anyway. I realised this was the third patient CT01 had seen today who had seemed down with regards to their health. CT01 sat close to the patient and spoke in a loud voice, given his poor hearing. His diabetes was briefly discussed, but the visit seemed to revolve more around his general health and providing him with company.
[Outside, in the car] I ask CT01 about the fact that many patients seemed resolved about dying or their poor health: “Is that difficult to hear?” CT01 says a lot of the patients she sees are older and do have other health complications. She says she sometimes goes home and just sits quietly and thinks about what they’ve said.
The DCTs that took part in the DICI were observed to undertake great social and emotional labour, particularly through their attempts to bridge the positionalities of patients and their healthcare professionals. In their daily labours, DCTs negotiate the terms on which glycaemic control (and related health conditions) is pursued, confront the likelihood of the immanent death of some patients, have to accept that their efforts to provide the best clinical guidance is sometimes ignored, but also have the opportunity to encourage and support patients in their goals e.g. losing weight.