Domain | Sub-domain | Quote |
---|---|---|
Quality of delivery and content delivered | Written person-centered transition plan | “I do have a large number with goals that aren’t at all related to their heart defect but that they feel very motivated about, so I try to find what they want to work on because I think it isn’t a question of...of us wanting to achieve empowerment so maybe it doesn’t matter if they manage to learn about their heart condition inside out or if they manage to get a pass in maths. It might have more to do with feeling capable and that I’ve succeeded at something – whatever it is. So trying to find something we can improve so they can feel they are developing in it.” - Paired interview no. 2 with Transition Coordinators |
Information and education about the condition and information and contact with the adult clinic | “They’re still discussing how the heart defect affects social aspects. The youngster says her classmates don’t know about her heart defect. The reason is she wants to keep her condition to herself and is scared that things will change in class if they find out about it. She then says one person in the class knows about her heart defect – “It depends on how close you are to that person”, she says. The TC confirms that the youth can decide for herself whether to tell the others in her class about her heart defect or to keep it to herself.” - Field note, observation 2, visit 1, center 2 | |
“The TC starts explaining the anatomical heart model and a colorful picture of the heart. She first explains normal physiology, before going on to describe by drawing what kind of heart defect he had from birth. And then the TC feeds back that this is complex knowledge and that he doesn’t have to understand everything now and it will come gradually. Then she explains what operations have been done. The youth says he didn’t actually know a number of things the TC is explaining. The TC then takes out more pictures of what the heart looks like now, after the operation. The TC keeps reiterating that this is very difficult to understand and that you have take it step by step. She asks if his head is spinning – a bit, says the youth. The TC then asks him what he thinks is the best way to learn this. Bit by bit, replies the youth. The TC also explains that it depends on how much you want to learn. They both conclude that this is the goal – to learn about the heart defect from the beginning. The TC now asks how he thinks he wants to learn. He wants to read up on it to learn. The TC explains she has prepared educational materials for other patients and emphasizes that he doesn’t need to know everything by next time – it isn’t a test.” Field note, observation 9, visit 1, center 2 | ||
Participant responsiveness | Moderators of adolescents’ responsiveness | “There was a girl I met on the first visit... I can’t remember when she was born but she was suffering badly with her mental health from the start and we weren’t focusing on the transition or heart defect at all – we couldn’t approach that. So the conversation wasn’t at all as we had planned. But when she came for the next visit, even though the last conversation had been of a different character it meant we had built some kind of trust – I was familiar with her situation and had a completely different starting point from which to approach these questions that I had been meaning to ask in our first meeting” - Paired interview no: 4 with Transition Coordinators |
“The TC goes on to ask the youth what she knows about her heart defect. This makes the youth a bit nervous. It feels like the conversation is starting to take a turn here – the youth isn’t as responsive but just gives shorter and shorter answers. Then the youth says to herself: I should know this. The TC replies: it isn’t a test.” - Excerpt from field note from observation no: 6, first visit in the transition program at Center 2. | ||
“Because I have some I’d like to meet every three months to work more intensively on certain things... medication management, for example, quite often it can be a year...that’s kind of too long! And for some it is...” - Paired interview no: 3 with Transition Coordinators | ||
Moderators of the TCs’ responsiveness | “We have quite a few with ADHD … And how to reach them as well as everything going on in their heads. How they say their heads are boiling over and it’s really hard to take in what it should be like when their heads are just fizzing and they say that one of their mates usually smokes some weed and then they get much calmer... “Yeah, okay, how do you reason with that? So it would have been really exciting to speak to someone who meets these youngsters more often and simply understand what the scenarios are and stuff. Because these are things you get stumped by. Not being taken aback and being able to carry on and have a good conversation, because these are things they can’t really tell their parents either, even if they have a good relationship with them. But it’s exciting... and a bit like, ‘oh’” - Paired interview no: 2 with Transition Coordinators | |
“I think it’s so much fun to put them in control – they’re not used to it. And I think it’s especially cool in the second meeting when they arrive and have that attitude and start talking, and it feels like they... that you can give them that – that they are allowed to speak up about what they want and we can give them that. I think that’s cool, and it feels like that’s not always the case in other care I’ve administered, but it’s been: this is what you need and we’ve decided what you need. It’s fun to turn it around.” - Paired interview no: 2 with Transition Coordinators | ||
ACHD nurses’ responsiveness | “Nurse 2 from Center 1: Yes, just like you say – sometimes, you’d just like to have a template for what issues you’re expected to raise, because we just wing it really – and then there are some things, like with studies, and when you’re supposed to be here, how you’re feeling... I mean the usual things, you deal with those anyway. But if there is something specific – then it would have been good... Nurse 1 from Center 1 = Yes Nurse 2 from Center 2 = Yes, I agree with that” - Excerpt from focus group with ACHD nurses | |
Facilitation strategies | HEADDS and communication tools – facilitating the partnership | “The TC starts the next speech bubble, which is sexuality and contraception. She doesn’t say the word, just points at the bubble. The youth says she hasn’t thought about it much before. The TC tells this youth she has to get in touch with a gynecologist if she wants the pill due to increased risk of blood clots with this specific heart defect. Then the TC carries on talking about pregnancy – that it’s not an obstacle for her but that she would probably need more monitoring during a pregnancy. The youths says she has thought about this a bit and didn’t think she could have children and wonders if there’s a risk her heart defect is hereditary. The TC explains it isn’t and that she can get pregnant. The youth seems to be happy about that but explains she had thought about adopting anyway as there are so many children in the world who need a parent. The TC gives her affirmation for this and says she is free to choose what she wants to do.” - Excerpt from field note from observation no: 2, first visit in the transition program at Center 2. |
Context | The impact of social context on implementation | “If you’re not allowed that freedom to think about what you want to do... they describe quite strict restrictions on leisure activities and choice of profession and so on... then you don’t reflect on your limitations either if someone else is in the driving seat. You’re not even allowed to reflect on it. It’s not until you face a problem that you reflect on the solution, if someone else is always in the driving seat.” - Informal interview with TC after participatory observation no: 6 in Center 2. |