Table 5.

Participant quotations as to whether clinicians’ behavior acknowledged patient expertise

Quotation number	Quotation
Whether the clinician enquired about self-management
1	“They (the diabetes educators) really do. They will actually ask me what I’ve done to try and treat it and when I say this is what I think I will do they will handle that OK.” (Female patient aged 32 years, T1DM duration 25 years)
2	“He (the endocrinologist) will listen to me and then he will say this is what I think you need to do to get your numbers down. Then he will say to me; what are you doing to get your numbers down?” (Male patient aged 25 years, T1DM duration 6 years)
3	“My endocrinologist encourages me to see the educators as much as possible. His attitude and it’s my attitude too, is that educators are more on the lifestyle and he looks at the numbers. He does the medical side of things and whenever it is a lifestyle issue, he deflects the question back to the educator. I’m actually comfortable with that; I think it is a good thing.” (Male patient aged 32 years, T1DM duration 9 years)
4	“From my perspective, at the end of the day the endocrinologist wants you to get your HbA1c as good as possible so you don’t get complications. I like that. I do have more time to talk with my educator about my diet and things. But knowing the fact that the endocrinologist just focuses on your health: to make sure that you don’t have high HbA1c s, I find that a secure and safe thing.” (Female patient aged 23 years, T1DM duration 11 years)
5	“I guess he is very clinical and very results focused and you are out of there in 10 minutes.” (Female patient aged 32 years, T1DM duration 25 years)
6	“I only see my endocrinologist every twelve months. He doesn’t ask me to talk for very long. It’s a quick thing based on all the numbers, so we don’t have a lot of time to sit and chat.” (Female patient aged 31 years, T1DM 21 years)
7	“If you’re not careful you can lose your independence and become disempowered very easily. The medical profession can have quite a negative impact on your life.” (Female patient aged 32 years, T1DM duration 25 years)
8	“They said you have to check with your endocrinologist about changing your insulin levels. I’m the one who makes the decisions. I feel I am quite autonomous. But they still wanted me to do so because they said it was protocol.” (Female patient aged 27 years, T1DM duration 16 years)
9	“I have a discussion. It’s a bit more of an open table. I don’t pay someone to tell me what I’m doing wrong … I wouldn’t go if that were the case.” (Male patient aged 25 years, T1DM duration 6 years)
10	“I recently changed endocrinologists, because (the previous endocrinologist) was very blasé. I’d only be there for about five minutes; ten minutes maximum. I had got used to it. But my boyfriend came with me once and he said that I needed someone who talked with me more about what I was doing. (The new endocrinologist) is really good. I was with him for an hour. We really went through a lot and I was very happy. So a big change!” (Female patient aged 27 years, T1DM duration 16 years)
Whether the clinician listened to the patient’s opinion about self-management
11	“I don’t know if he’s a good or a bad endocrinologist compared to anyone else but he seems good because he’ll listen to me.” (Male patient aged 25 years, T1DM duration 6 years)
12	“From what I have experienced so far I have not had any one fantastic yet. The (endocrinologist) that I have at the moment, it is like talking to a cardboard box: there is nothing there. She has the knowledge but she won’t listen.” (Female patient aged 33 years, T1DM duration 13 years)
13	“I did see (an endocrinologist) but she wasn’t someone you could talk to. So I haven’t seen anyone since.” (Female patient aged 30 years, T1DM 12 years)
14	“I think my body was reacting differently to what she suggested … It’s just those sorts of things where she obviously was just saying what her medical wad of documentation told her. Textbook stuff!” (Female patient aged 23 years, T1DM duration 13 years)
15	“The diabetes educator, it is like they have been told these rules that they seem to pass on. … It is like they think it is really simple. … For example she said if you’re hypo you need to eat two exchanges of low GI stuff after you’ve eaten an exchange of this. And I said: ‘No I don’t; then I’m going to be too high.’ It is always the textbook answer that is given.” (Male patient aged 28 years, T1DM duration 3 years)
16	“They’re like; ‘We recommend you should definitely do this.’ And I’m like; ‘Oh I found it hasn’t worked in the past.’ But I give it a go for a few days and I change the insulin. But then I just get high sugars and I get annoyed so I just change it back again.” (Female patient aged 33 years, T1DM duration 13 years)
17	“My body was reacting differently to what she (the endocrinologist) expected. I was exercising regularly … I was on Levemir … she told me not to reduce my long acting for exercise. But I said ‘No! I know what I am like.’ But I reduced it slightly and then just kept getting hypos until I dramatically reduced it. So those sorts of things where she obviously was applying her medical documentation rather than listening to me.” (Female patient aged 23 years, T1DM duration 13 years)
18	“Then they told me to split my Lantus but I didn’t want to add another needle to my day so I just adjusted all my insulins myself by trial and error.” (Female patient aged 21 years, T1DM duration 17 years)
19	“The endocrinologist told me how much to inject when I had a meal. But he didn’t consider that I had a laboring job. I had a really bad hypo one day because I injected what he told me to but it was more than I needed for the physical work I was doing. It hit me pretty quickly that I had to be responsible for managing this. I could not rely on the endocrinologists and nurses because only I could work out how much exercise was involved in that day’s work.” (Male patient aged 25 years, T1DM duration 6 years)

Abbreviation: T1DM, type 1 diabetes mellitus.