Table 3

Expert Patients’ knowledge and wisdom for health professionals

ThemeSample quotes
Being diagnosed with diabetes can be frightening, and this potential fear should be addressed by health professionals.‘When I got the diagnosis ten years ago, I actually thought it was a death sentence’. P21 (woman with T2D)
‘Help the person to accept he/she has [diabetes], without fear, because often we are afraid when we are told [we have diabetes]’. P6 (woman with T2D)
Diabetes puts a burden on patients and their families.‘I am a parent of a child who lives with diabetes. Check in on the parents because it is hard on the parents too’. P8 (woman, mother of a teen with T1D)
‘He was low at night, [I used to] give him his glucose and then I go and get my book(…)and read for ten minutes and then stop and check and see how are you doing now. And maybe do another blood test’. P12 (woman, wife of man with T1D)
Health professionals influence patients’ attitudes about their health and diabetes.‘Healthcare providers should stick with the reality: this is a disease that can be managed, [if] you work at it.(…)If you don’t do the work, you are not going to see the results’. P12 (woman, wife of man with T1D)
‘Give a positive attitude towards diabetes and towards the management of it. It’s not all bad. It’s something that will make the patient live probably a better life than they would if they didn’t have diabetes’. P19 (man with T1D)
‘Tell people when they do something right, what they are doing well’. P20 (woman, mother of a teen with T1D)
‘I feel healthy when my endocrinologist is happy with my results’. P13 (man with T2D)
Health professionals can reinforce or alleviate the blame and shame that patients may feel.‘There is a lot of shame in diabetes. It’s one of the only chronic illnesses where the people who live with it are constantly blamed for how their disease is managed’. P20 (woman, mother of a teen with T1D)
‘Sometimes, too, for people like me who are a little overweight, they will immediately put it on the fact that it is because you are overweight that you have diabetes’. P6 (woman with T2D)
‘I have the privilege of working with very amazing [health professionals] all very understanding people(…)I used to criticise myself too much and say, Oh my number was bad this day and stuff like that and they will always correct me and say, you know what, it was an off day’. P9 (woman with T1D)
Patients are people with lives beyond their diabetes.‘Go beyond the disease. Do not see the disease. Rather, recognise the person who is in front of you’. P4 (man with T2D)
‘Speaking for everyone with diabetes, I will have to say, you really have to work to understand your patients. And that’s a much broader understanding than what the A1C is, what the blood sugar levels are this morning’. P11 (man with T1D)
‘Learn about their life, learn about what they like to do in their free time, their career, if they have any free time, if they are working three jobs, and their personal leisure(…)By knowing that person, their background, their history, all about them, I think it will open a whole new appreciation for the physician as to where that person is coming from. And maybe why they may be having some issues’. P18 (woman with T1D)
‘I had received some very tragic news, and my doctor … I was missing appointments … and I was just having a hard time … and then finally he called me. I thought “Oh, he called me, I better get my butt in there.” So I sat down and as soon as he got into the room I started crying so hard. And he looked at me and he goes, “Whoa, I don’t think this appointment is going to go the way I thought it was going to go.” And I said, “No, probably not.” And I said I haven’t been coming because I’m dealing with x and y, and he kind of sat still and then he goes, “Okay, can we just put your diabetes on a shelf for a little bit here?” And I said … “Thank you”’. P21 (woman with T2D)
It is important for health professionals to provide care that respects the social, cultural and historical contexts of patients.‘As an Indigenous patient(…)I expect health professionals to speak to me as an equal, as a human being’. P5 (man with pre-diabetes)
‘The overall thing I will say, being an Indigenous person, is not to label, not to make us feel like we are inferior, that we can’t learn how to do this, that we just have(…)our own way to do it’. P8 (woman, mother of a teen with T1D)
Health professionals should ensure their knowledge about diabetes is up to date.‘General practitioners know nothing about [diabetes]. And they don’t really like patients to tell them that they are(wrong…)My family doctor acknowledges that I know enough to teach doctors’. P2 (man with T2D)
Patients need to be able to ask questions until they fully understand.‘I expect health professionals to(…)explain things in the way that I understand and if I have questions that need clarification, that is my right to ask those questions and the responsibility of the health professional to explain things to the point that I understand the situation’. P5 (man with pre-diabetes)
Patients want to be part of decision making about their care.‘Often, in some treatments that they give you, you have options. As long as the doctor is open(…)For some doctors, it will be NO right away because they are used to giving (a specific medication)’. P1 (man with T2D)
‘(When prescribed medication is not well-tolerated)as patients, we can feel like guinea pigs’. P6 (woman with T2D)
‘What health professionals have to consider when they talk with the patients is not to tell patients what they have to do. Many people are not willing to be told. But if there is a dialogue(…)that’s the direction that I want to see things as a patient’. P5 (man with pre-diabetes)
  • T1D, type 1 diabetes; T2D, type 2 diabetes.