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Table 2 Illustration of components, subcategories and quotes

From: Mechanisms of impact and experiences of a person-centred transition programme for adolescents with CHD: the Stepstones project

Component Subcategory Quote
Transition coordinator Being seen as a unique person in a safe space AI 4: “When you’re in your teens, you might not want your parents to know everything...I remember she said this is something that will just stay between you and me – these conversations. That the parents wouldn’t be there and she said they didn’t have to know anything about it if you don’t want them to know anything. And that meant I knew I could trust it was like that.”
Meeting in an equal caring relationship enhanced control AI 8: “I was into becoming a blood donor, so we talked a lot about if I could do that…So it felt like I had a lot of control. But it was also very clear that she had things that she needed to bring up too, which was kind of a relief.”
Need for additional tailoring AI 1: “If you would have known that I was not that affected by my heart defect in my everyday life you wouldn’t have had to ask those questions. Partly because it maybe is a waste of your time and resources…To know which people are participating in this study and how much they are affected by their heart defect, I guess. I mean it wasn’t a big thing really, but it felt maybe a bit strange.”
Written person-centred transition plan The personal narrative was a useful tool but somewhat unclear AI 8: “It was good because I still thought it was hard to talk about my heart condition. And it was a real relief I didn’t need to say that when I was there because she had read my narrative before and understood. So that was a real relief. It was nice not to have to mention it yourself.”
Goal setting was motivational and supportive AI 3: “Because it was about me. You feel a bit stupid when you’re going to explain your heart condition and you don’t know anything – you don’t even know what it’s called. So I practised learning the name. And that was more because I felt a bit stupid when people asked...like I didn’t have a clue about my own body or something.”
Provision of information and education about condition, treatment and health behaviours Getting to learn in their own way and with others AI 8: “I liked seeing it in front of me. It was like, very clearly presented. There was a clear list of things that were bad or could involve a risk... so just seeing it in front of you was like...because I’m very visual, so it was really great to see it right there, otherwise it gets very abstract.”
Talking about CHD and health behaviours led to increased insight AI 10: “It feels very important. I mean it’s still a part of me and my growing up and my birth. Yet it hasn’t been a really big part of my life because I’ve never needed surgery since I was born and I’ve only gone for check-ups every four years. So it’s not something you talk about a lot. But it still felt important. It’s very important for me to know.”
Availability by telephone and email Availability facilitated a safe caring relationship with the TC AI 10: “So she was really helpful and said I can call her whenever, if something happens...I got really anxious once, so I called her and it felt much better because she was really supportive... So she really took it very seriously. So, I feel particularly safe knowing that you can turn to someone if you get worried or if something happens.”
Information about and contact with the adult clinic Meeting with staff from adult care gave a sense of security AI 8:” It was nice to see them, that they will be there for me when it’s time. Like even meeting the social worker…That it will not be the first time I will meet the doctor when I go to my first visit.”
Familiarisation with facilities at the adult clinic AI 4: “It was really good that I got to go in and took a look around the building and stuff. I go to the adult clinic by myself now and it feels good because I kind of know where I’m going... to know where I’m going. Otherwise, you can easily feel very lost.”
Guidance of parents Trusting the TC PI 9:” I didn’t expect any support either…I haven’t thought of it like that, that I would receive support in my role as a parent…It feels like I haven’t been that involved…that this was his thing. I haven’t perceived that I should have a role in this.”
Information about the transfer and transition gave confidence and new perspectives PI 7: “Now you are forced to start thinking ‘Do I think that she takes responsibility in this?’ It makes you think…So we as parents have started to discuss this more ‘What do you think?’ ‘Oh, do we think differently?’ So it has affected us a bit”
Ambivalence about changing roles PI 3: “That he still takes responsibility when he feels ill, like last summer, that he actually calls the ambulance and goes to the hospital and stuff. Then he calls and tells us... That he’s grown, that perhaps he knows more about what to do and like he’s learnt to listen to his body himself. And that might have been a combination of both us as parents doing a good job and hopefully, that he got to meet the TC a few times and might have learnt something there.”
PI 6: “I think both my partner and I have felt that the feedback to us could have been a little better... but I mean, the way these meetings and information evenings have been set up – there’s nothing wrong with that. But I think they could have perhaps given us feedback a little more and more often...to the parents.”
Meeting with peers Meeting others with CHD gave a sense of belonging AI 14: “Another take home for me is these wonderful friends I now have, who can relate to the heart condition so to speak, which other people might not be able to.”
Role models gave insight, hope and a sense of capability AI 2: “They were very calm and had kind of come to terms with their heart condition. So it felt like their way of looking at their heart condition was exactly like mine. That there’s something wrong there but that it won’t prevent me from living my own life. It felt like they knew and that you could identify with it. Definitely.”
AI 8: “I remember I had an issue with my scars before. I still have some days. And I remember talking to her about it... and she said that you distance yourself to it eventually. You get used to it and learn to live with it. And it was a bit of a relief to hear there were people who had progressed a bit further than me. So, you can get to thinking if it turned out okay for them, it’ll be okay for me too.”
Transfer to adult care Feeling prepared and recognized AI 3: “They were so sweet and prepared and we got to sit down and I got to ask all my questions. And even though I didn’t have that many questions, just the feeling that she took the time for me and allowed me to ask my silly questions was very nice.”
Asynchrony between the programme and usual care AI 9: “I got an appointment at the adult clinic before the study was finished, so I had already met the staff there and therefore I only met with the TC during the last visit. So, my transfer visit didn’t go as planned because I had already met them before I had my last check up in paediatric care. It was a bit weird but I had no problems with it.”
  1. AI adolescent interview, PI parent interview