The results from the interviews with the COPD and diabetes participants are presented together, and where important differences were encountered, they are specifically mentioned.
The participants were generally very positive about the home-based programmes. This was illustrated in statements such as:
Positive, the whole thing, this is our future. (P6)
Why on earth has nobody thought of this before! (P3)
All in all, I would say it was positive. (P4)
A good way of doing it. (P10)
Receiving education at home was well accepted by the participants. Both the education in itself and the opportunity to learn from peers were emphasised:
Yes, it was very interesting. Then you can hear about how other people experience a situation similar to the one you are in yourself. (P7)
Many issues cropped up from the other people who took part. (P1)
You can all talk and you can listen to each other … some people have this to say, others may have that to say. (P8)
What I thought about it was, wow, if I could have learned this straight away when I found out that I had become diabetic, it would have been so much easier then. (P9)
The communication consisted mainly of dialogue in the form of questions and answers to the lecturer, with less discussion directly between the participants. Everyone had a chance to speak, but the technique imposed some limitations:
You could get through when you wanted and say what you thought. (P5)
…several people started to talk at the same time. And then you stopped again when you heard other people speaking, and then everyone started talking at the same time again. (P1)
The educational videos were well received by the participants; they found the content relevant and that the videos gave peace and quiet for learning. They also found the duration appropriate and the lack of broadcast TV quality not a problem. The opportunity to ask questions in the TV sessions to clarify issues after watching the video was also perceived as positive:
First we watch the video … then the lecturer talks about the video, and then you can ask questions to get things clear. (P7)
All participants had watched the educational videos before the group sessions.
The in-personstart-up meeting
Four participants with COPD and three with diabetes attended the in-person start-up meeting held for their group. The other three could not attend due to practical issues or illness.
Those who had attended were positive to a start-up meeting, but those unable to attend also felt that the home programme worked well, as expressed by one of them:
It was actually interesting to get to know them, the way we did. (P8)
Supervised group exercise training and the exercise video
Only the COPD programme contained exercise-training sessions. The physiotherapist-supervised exercise sessions were well received by the participants, one of whom said:
Actually it went almost as well as it did over there [at the rehabilitation centre] … It was the same feeling. You would think that you would get absorbed in looking at the others, but in fact you didn't. You concentrated on [the physiotherapist] the whole time. (P5)
Another participant emphasised the social aspect of exercising together, even though it was on TV:
And to exercise together with other people, never mind that it is happening at home in their own homes, it means more than you might think. Because there's the social aspect as well. Because even though it's happening on TV you don't think about that. It's just as though we were together with each other. (P3)
Some participants thought there should have been more group exercise sessions, and three of the five participants exercised using the follow-along exercise video.
The social aspect
We did not ask about the social aspect; it emerged spontaneously in some of the interviews with the COPD participants. As expressed by two of them:
The social aspect, I heard several mention that. (P5)
It was just as though we hadn't done anything other than sitting at home in our own living room and chatting with each other via the TV. So, that way you also included the social bit, which is hugely important. (P3)
However, one COPD participant commented on a lack of eye contact in the video sessions compared to meeting people in person:
I like to look people in the eye when I talk to them … it was not quite the same as having them sitting over there on the sofa or in a chair in front of me. (P2)
The individual consultations and the health diary
The individual consultations were well perceived by both patient groups. They provided an opportunity to discuss personal issues, and they were seen almost as face-to-face conversations by some participants:
It was almost like sitting and talking face to face. (P9)
We could ask about things that you might not want to ask in public. (P2)
However, the need to ask questions in the individual consultations varied among the participants, for example, depending on the stability of the disease. The health diary was used in the individual consultations, and a few participants used the health diary in a self-management perspective:
If I had not exercised on one day, that was bad (laughter). If you had done a little bit, that was OK, as long as the blood sugar stayed stable. (P6)
Most participants updated the health diary on a daily basis, while a few updated it for several days at once. For some of the questions in the diary, a finer grading of choices was suggested.
Lunches and Coffee Breaks
One diabetes participant missed the lunches from a conventional course; another one missed the coffee breaks that provide the chance to select a smaller group of peers to talk about personal matters not suitable for plenary discussion:
…during a break where you can chat with each other. About personal things, for example. Because there are after all many other things that go with diabetes, which might not be things you want to discuss in public. (P9)
One of the COPD participants suggested incorporating a small-talk session in the programme for more informal chat:
But I would have like a short break to chat, to put it like that, I mean, not just about the topic, but that we could talk about this and that. (P3)
An issue raised by one COPD participant was the need for conserving energy. If you are severely ill, it can be a challenge to prepare yourself for participation and to travel to the rehabilitation centre. By participating from home, you can conserve energy:
You have to get ready, get dressed, you're going to go out. It costs such an unbelievable amount of energy that you abandon the idea. It's so, you simply can't manage it. When you have it at home, of course you can grab your hairbrush, so that you look more or less OK (laughter) so, you can get up in the morning and take your medicine the way you always do, and get dressed, the things you need to be home on that day. You don't have to go anywhere. Whatever energy you have, you will still have it. (P3)
Retention of participants
We had high participant retention and there were no dropouts from the study, but one person in the COPD group was unable to participate for two weeks due to a hospital admission. None of the participants reported that the duration of the home programmes was too long. Several of the COPD participants suggested that the home programme could be of longer duration.