Table 4 Summary of responses about what and how information is needed by patients’ and providers’ regarding diabetes self-management and clinical practice, respectively
Groups | Codes | Summary | Example quotation |
|---|---|---|---|
Participants with T1D | What information | Answers about specific challenges in their self-management | “[What is important is] not what we struggle most with on average but what we need to do in specific situations and individual days that stand out as being difficult” (T1D_P2) |
How information is or should be shared | Answers in the form of recommendations from HCPs about why specific self-management challenges occur and how to respond to them | “[Most healthcare providers] too far away from the specific situation … You get answers after a day or two … but that is not when I am in the situation … I don’t want to disturb doctors and nurses with my small problems, but maybe they are not so small if we acknowledge what they really are” (T1D_P3) “More appointments more frequently … and maybe get more continual information … since the [diabetes] situation changes” (T1D_P6) | |
Specialists | What information | • To differentiate patients based on situation and needs • To understand patient’s mental state to effectively guide them | “For example, I cannot expect this one man to get a perfectly controlled diabetes. I would be happy if his hba1c came down to 9%, whereas another patient who is themselves a doctor, I can expect him to have an hba1c around 7% or even below 7% without hypoglycaemia” (Specialist2). “Separate the patients in two groups - the ones who have hba1c higher than 8.5 or 9 who are the higher risk ones, [and] the ones with lower than 6–8% who still have problems … different problems” (Specialist1) “A person’s mental state and resources, of course … gives you a background for what kind of targets you can expect” (Specialist2) |
How information is or should be shared | It is the responsibility of the patients to collect and share information as well as provide explanation of their situations. | “[Patients must] take the responsibility [themselves]” in order for the HCP to be able “to understand diabetes and insulin and how all these things function together” (Specialist2) | |
Participants with T2D | What information | • Motivation, • To understand how lifestyle choices affect health (i.e. BG) | “I was better in the starting phase to note down drinks and food … but it has faded, and I don’t today. Need more motivation” (T2D_P2) “I have injured knees and shoulders, so motivation is lacking” (T2D_P1) “I kind of feel like I don’t self-manage because … I think it goes a bit slow when I test my blood sugar. It’s usually high and it doesn’t really change much … I can’t see what is happening” (T2D_P1). |
How information is or should be shared | Disease-specific knowledge from HCPs | “[Healthcare providers] could be more specific. They are pretty diffuse and say “you can do this”, but they need to be more specific and say “you need to do this”, and then tell me the things I need to be doing” (T2D_P2) | |
GPs | What information | • Information about specific challenges, • To understand and treat all of a patient’s health challenges | “If [the patients] have reliable information, we use that more than medical history because things happen along the way” (GP1) “Patients don’t just have diabetes. Many are mixed with a lot of other things and I feel that can be confusing because they high blood pressure, maybe are overweight, maybe have low back pain, maybe a lot of other things” (GP3) |
How information is or should be shared | Health measurements and patient recollection/evidence of challenges to then discuss together | “Things I find important focus on how it has been since last time. Any hypos? Are they in okay shape? Anything wrong? Sometimes I check blood pressure, but not always. I usually check hba1c … then we make an appointment and discuss the plan” (GP1) |