Self-management of type 2 diabetes has been identified as a complex task, which requires significant organisational skills and energy from the person with diabetes as well as others (Thorne 1993, DiMatteo 2004, Anderson 2007, Macdonald et al. 2008).
Consistent with this, the data generated from the evaluation of interviews demonstrated that patients participating in the research were expected to have a high level of knowledge and competency. Coaching calls followed a semi-standardised protocol where questions were asked about medication, blood test results, nutrition and exercise, and patients were advised on how they could make improvements. Where participants demonstrated a deviation from or a failure to meet targets the PN provided information and support to assist them to do so. However, the evaluation identified that these tasks related to managing type 2 diabetes took place in conjunction with other quite specific daily needs and life events.
- 1‘I couldn’t do my weights this week’: the unique social context in which participants managed their diabetes.
For some of the patient participants, managing their diabetes was part of living with and managing a number of conditions. Patient participants reported taking medications for diabetes as well as hypertension, high cholesterol, cancer, pain control, sleeplessness, depression, anxiety, epilepsy and cardiac problems. Of the twelve patient participants in the recorded coaching sessions, most were taking at least four medications, one was on three different medications and one was on nine different medications. Those on higher numbers of medications were more confused about the names of the medications, their dosages and which medication related to which condition.
The number of conditions complicated people’s daily lives, both in terms of undertaking daily living activities and in terms of undertaking diabetes-specific activities. People who had painful conditions or had had recent surgery for cancers or heart conditions reported that it was difficult to complete tasks such as cooking a meal, doing the shopping or doing gardening. One female patient who was treated for cancer of the kidney just prior to the interview had not been able to care for her grandchildren, an activity she enjoyed. Surgery and recent hospitalisations or having the ‘common cold’ meant that diabetes-specific activities such as exercising and eating well were compromised, often taking a lower priority to simply accomplishing basic tasks to survive the day. For example, a female with mobility problems took several hours to prepare a meal, while the patient with cancer of the kidney was no longer walking the 3.5 km to the shops because there was a steep hill involved. One man was walking but not using his usual weights because of a shoulder injury. A hospitalisation might also result in missed appointments for blood tests and general practice visits including visiting the PN to discuss diabetes regimes. Social activities also impeded diabetes-specific activities. Visits to relatives and friends might mean relaxing some of the restrictions on diet or alcohol intake.
- 2The impact of social context on the PNs’ roles in coaching to achieve better diabetes control.
The analysis of the coaching calls demonstrated that they were made and experienced within this complex social milieu. Training and the coaching call protocol relate only to diabetes and associated risk factors. However, the recorded calls demonstrated that participants experienced the care and self-management of diabetes within the context of their overall lives and other conditions, with participants frequently explaining the circumstances influencing their approach to their diabetes on a weekly or daily basis. At the same time, the coaching calls introduced a relationship between the PN and the participant into this social complexity. How the relationship developed was partly determined by the perceptions of both the PN and participant of the role the calls played in their lives. Some PNs recognised the social context in which people experienced their diabetes and its care, while others chose to concentrate exclusively on coaching to improve diabetes control.
- 3‘Alright my love, how is the diabetes going?’: Relationships between the PN and participants.
Two distinct relationships emerged from the data and maybe characterised as ‘Treating to Target’ (T2T) and ‘Personalised Care’ (PC). In T2T, the PN was primarily concerned that the patient reached the disease targets set by the study protocol as effective control of type 2 diabetes and its associated risk factors. PNs who ‘treated to target’ concentrated on achieving the set targets regardless of the patient participants’ circumstances or their verbalised needs. In PC, the PN was aware of and responsive to the mitigating factors in the person’s life that made it difficult for the person to achieve an ideal target including his/her health, emotions and family situation.
Characteristics of T2T approach:
In this approach, the PN undertook to coach the participant on the blood glucose, cholesterol and blood pressure level targets they needed to achieve with little or no divergence from the protocol. The manner of delivery was generally impersonal, though not unkind. When the participant offered additional information about him/herself, it was generally ignored or if the participant was persistent then it was responded to very briefly, usually followed by a request to return to the coaching protocol.
Treating to target is a means of making participants aware of the targets they must reach and assisting patients to achieve and maintain the behaviours that will achieve them. The focus is on practical advice on ways to achieve the targets and not on other issues unrelated to their diabetes risk factors. While a participant’s achievements might be acknowledged, they are acknowledged in the context of meeting the target, rather than a personal achievement, with meaning for their identity and wider life.
PN: Now your blood pressure-what was your last reading?
Part: 133 over 82.
PN: That is pretty good-we just aim not to go any higher-so less than 130 over 80 is really good but I think that is really good. Now what is your weight at the moment?
Sometimes acknowledgement even came in a negative form, highlighting how far short of the target the person still remains.
PN: do you remember the result (of your HbA1C blood test)?
Part: yes it was 8.
PN: OK. Do you know what is normal for that?
Part: They are going for 5.5 or 6 but when it is 8 it is no good.
PN: That is right, it should be 6.5. That is normal. You need to aim to bring it down.
The wider contexts of the person’s life are often ignored or acknowledged only fleetingly.
PN: OK, try (to walk) everyday instead of every two or three days, try to do 15 minutes twice a day.
Part: Alright, I will try to do it.
PN: OK how much activity do you do around the house?
Part: Oh in the house I can make a cup of coffee, I can cook a little bit but if I have to cook dinner I have to start at 12 o’clock because I am so slow. I have pins and needles in my hands, I have no strength. It is very bad for me, this life; my life- it is really horrible.
PN: So putting on weight is not good.
Characteristics of the PC approach:
Practice nurses who had a personalised care approach engaged with the research participant on a personal basis. There was acknowledgement of past conversations between them and that they are in a relationship. Coach calls may diverge from the protocol to discuss the participant’s health more broadly, talk of grandchildren or the weather:
PN: Alright, my love, how is the diabetes going?
Part: Oh yes, reasonable.
PN: We did your 12 monthly cycle of care a few weeks ago didn’t we?
Part: We did, yes.
PN: Can you remember what your HbA1c was at that time?
PN: That is right! What was it previously?
PN: Right! So you are doing alright with that, aren’t you? Considering all that you have been through (death of relative; diagnosis of cancer).
While targets are acknowledged as an ideal to strive for, reasons for not achieving them are acknowledged by the PN:
PN: You wanted to lose some weight-is that right?
Part: Yeah-well I would like to; it is a bit hard…the dietician said I should because it would protect my remaining kidney but it’s a bit hard…
PN: And it is a very hard thing to do just after you have been through an operation.
Encouragement and acknowledgement of even small achievements are a feature of this approach.
PN: It looks like the last time I spoke with you (your weight) was 79.4. Now it is 77.6.
Part: Actually I have had to tighten my belt an extra notch so I must be losing a little bit of weight.
There is room to share jokes and to share experiences.
Part: I see the eye doctor…he wants to see me every 12 months…apparently I am developing cataracts.
PN: I think if you have the start of cataracts it is better to keep a good eye on them (Both laugh). Sorry!
Part: I haven’t been (to the gym) for a week now. I have been feeling a bit yuck (with a sore throat and fatigue).
PN: Oh! Hasn’t everybody? My God, the daughters are the same and my husband has no motivation whatever...I think it’s probably these viruses that sort of…
- 4‘You’ve got to get some enjoyment out of life’: Participants’ approaches to their own targets
The analysis demonstrated that these approaches are not limited to the PNs. One interview identified that a carer (spouse) had adopted a T2T approach. She was monitoring her husband’s diet and exercise very carefully so he maintained the target levels. However, at the point in his life when the interview took place, she was reluctant to demand more of him as he had recently had heart surgery. Another interview demonstrated that a participant himself had adopted this approach and was working towards achieving each of the levels. He expressed high levels of satisfaction with the personal control he experienced.
Surprisingly, only one participant challenged a T2T PN, pointing out the targets were unrealistic in his circumstances and removed any enjoyment from his life. This participant considered that a regular glass of whisky was reasonable and said he would continue this habit. The T2T PN chose to ignore this challenge and pursued the point that little alcohol and alcohol-free days were necessary parts of any diabetes control strategy. In general, however, we found little indication that participants objected to the T2T approach or saw it as somehow ‘draconian’. While T2T overlooked mitigating factors, it was not necessarily delivered in an aggressive manner.
The interviews between PNs who practised PC and their participants showed an easygoing relationship where the participant could express her/his needs and request advice. However, there was no indication that this led to greater motivation. The target levels patients were achieving did not seem to be dependent on the approaches. Participants reported making improvements regardless of the PN’s approach and despite mitigating factors. No participants expressed antipathy towards any PNs, with all of them making the point they appreciated the PNs level of interest on their health.