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Table 2 Themes identified and representative quotes from feasibility focus groups and usability testing

From: User-centered design of a web-based self-management site for individuals with type 2 diabetes – providing a sense of control and community

Themes

Representative quotes

1) Desire for information

“I want to be able to put maybe my question on here and then maybe have a doctor or nurse come in and give me sort of an immediate answer, because I’m not going to see my specialist for three months. … People like … something that’s immediate.” [2A09]

2) Desire for community

a) “Recently, I’ve been feeling like I need to talk to someone because some things are happening now, like I’m experiencing tingling and stuff like that. This is all new to me, so I’m starting to kind of freak out about it. Like, I’ve seen people about it, but to be able to say, ok, what do you guys experience? To have that comfort level, as a support, even if it’s online, so that would bring me back to society, to have that connection to someone, others that are going through the same thing. You know, friends and family just don’t fully really understand.” [1A12]

b) “Sometimes you want to have a really quick answer or something and you’re trying to look for the answer, but you can only talk to certain people at certain times. If you could just type in a question and maybe other people, other diabetics, might be able to answer the question … To be able to personalize I think … would be great.” [1A12]

c) “There are people who are sensitive… They have diabetes but they don’t want to tell people… They don’t want to tell friends, or family.” [2B02]

d) “But people treat you differently. [Even though] it’s ok to have a piece of cake now and then, but [if] people hear you have diabetes, [they say] “Should you be touching that!?” All of a sudden, people are focusing in on you and you are just trying to be part of the crowd and they’re just all of sudden coming at you.” [2A09]

3) Potential roles of an online self-management website

Motivate for behavior change

a) “But when I saw the woman who essentially came out with the do’s and don’ts of the disease, that kind of enlightened me, it opened my mind, it made me hopeful. It made me think: “Well, there is an alternative: I should take care of myself, I should recognize the issues, I should take care of my feet which means cleaning them more often, I should see a foot doctor who addresses the calluses”. So I think that the videos have enlightened me to a point where I have realized the detriment of the disease, where I realized the precautionary measures I should keep in mind in order to not to get to that stage.” [3A21]

Facilitate self-monitoring and self-management tasks

b) “And what I would do now is go back and take a look to see how to interpret that blood pressure: What does it mean, should I change something?” [3B56]

c) “And complete this, rather than developing your own form which I do now, go on the computer and try to develop a form, this is so much easier and this would remind me that I didn’t take it.” [3B51]

d) “I think you have to be anal retentive to do this quite frankly.” [3B17]

An adjunct to care between visits to HCPs

e) “Doctors, practitioners don’t have time. They’ve got their waiting rooms full and they have got so much allotted time for each one, so they just deal with it immediately, and there is no time for questions, no time for research, there’s no time for anything.” [2A09]

f) “I would probably go to it because as a diabetic you don’t want to go all the way to a doctor to ask the questions, and knowing that this site is monitored and put together by health professionals, it would be nice to go and get an answer when you need it, instead of saying, oh when I see the doctor the next time…” [3B17]

Facilitate interaction with HCPs

g) “I don’t know if it’s there in this program where I can record everyday and then make a print out to take to the specialist or the doctor to show them what’s happening.” [3A19]

4) Importance of a patient-centered perspective

a) One participant commented regarding a video that graphically depicted the consequences of poor dental hygiene in diabetes, which concluded with an upbeat message, that: “And it’s not negative in the sense that the information it’s trying to transmit is negative; it’s negative looking at the results of not caring. That’s the negativity feeling that I’m having. It turns your stomach, you know. But the information itself is positive. So here I have a sort of mixed bag of feelings: really the negativity of looking at uncared teeth, and the positiveness of getting help to ensure that it doesn’t get to that point.” [3A21]

b) “People are going to come from different points of view, different education levels and most importantly, different cultural backgrounds, and right now, my first reaction is to comment and say this is great for anyone that was raised in the Western society.” [3B12]

5) Barriers and facilitators to use

Barriers

Perceived lack of relevance:

a) “Always seemed to me that they were related more to people that are sedentary.” [3B56] (when commenting on current publicly available websites)

Not part of usual routine:

b) “You know, personally I wouldn’t use it. ‘Cause… maybe it’s because of my routine. Again, I’m very focused in the morning: I get up, this is what I’ve got to do, I’ve got my stuff right handy next to the bed, so I take it go on to the washroom and power down the pills, and then have my breakfast. It’s my routine.” [3B56]

 

c) “I’m not every day in front of a computer so, I usually go once in the morning and once before bed to check what I’ve got on and through the day I don’t bother.” [3A02]

Facilitators

Availability for goal-directed use:

d) “Like the thing about the nerves it bothered me, you know, when I heard that you can get an amputation as a result so I went in and did a whole read up on nerves and how to take care of it. But that’s just me. That’s what I like to do on my spare time. And something like this I would be on it all the time…enjoying myself and have a few there that all the time.” [3A21]