Stakeholder findings: focus group participants’ experiences mapped to overarching themes
| Overarching themes | Forming trusting relationships | Being involved in healthcare discussions and decisions |
| Favourable experiences | Rachel, a young girl with diabetes, described having a very good relationship with the diabetic team and ward staff: ‘Hm, it’s just the nurses really like nice. Like, the first night I was staying over they were staying it’s a sleepover and stuff.’ (Rachel, FG1, line 746 & 747) She acknowledged how continuity of care helped her become more familiar with the staff: ‘they’re always in the clinic when I am there’. (Rachel, FG1, line 678) She commented on how the diabetic team got to know her, by chatting casually and taking an interest in her wider life: ‘they like asked me what school I’m going to this year’ and about ‘my baby sister and stuff’. (Rachel, FG1, line 815–819) Participants experienced some HCPs as being easier to talk to than others. Rachel felt that she could talk to the diabetic team: ‘(…)I can talk to them more ‘cos you know them.’ (Rachel, FG1, line 621) From the perspective of Laura, a young girl with a recent diagnosis of diabetes, a caring nature was an important factor: ‘[HCPs who] make you feel as if they care [were easier to talk to]’. (Laura, FG2, line 432) | Laura was well informed by her hospital consultant, who had seen her when she was first diagnosed with diabetes: ‘My consultant like came the day before(…)and he explained the whole thing in detail.’ (Laura, FG2, line) Laura’s experience of being well informed resembled Rachel’s: ‘The doctor like normally tells me everything that I need to know anyway and they put it in like ways that I like, know.’ (Rachel, FG1, line 657 & 658) Sarah, an adolescent with spina bifida and scoliosis, felt she had some control over her treatment: ‘Uhm, I might have to get the surgery on my back, because I’ve got scoliosis, em, so if it gets like really, it’s not too bad but if it gets worse I have to have surgery so I feel as if I have like a choice because I don’t have to have it, and I don’t want it.(…)I don’t want to have it.’ (Sarah, FG2, line 743–748) Although all participants wanted to be informed, the oldest participant, Darren, a young boy with spina bifida and epilepsy, preferred his parents to ask and answer questions, and doctors to make decisions on his behalf: ‘GD: Do you ever have any questions (Darren)? Darren: Ah…don't think so. AT: Are you happy for your parents to ask the questions? Darren: Yeah. AT: And you just listen? Darren: Yeah (smiling and laughing).’ (Verbatim excerpt, FG1, line 555–560) |
| Unfavourable experiences | Sarah found it difficult to trust HCPs who were uncaring: ‘Well yesterday I had to get a line [cannula] in and there was four different doctors that tried(…)and I thought like the doctors didn’t really care, they were just gonna get it in, they didn’t really care what I was thinking.(…)Well I know they needed to do it. But they didn’t care,(…)they didn’t care if they hurt me.’ (Sarah, FG2, line 438–441 & 512) | During her cannulation experience, Sarah felt angry because HCPs failed to grant her wishes: ‘I always tell them to put it, try my feet first because I don’t have any feeling in my feet(…)I told the doctor not to put it in there and they still did it.(…)I was really cross after it because I thought all that pain.’ (Sarah, FG2, line 460–465) Sarah spoke about feeling excluded when a doctor spoke discretely to her mother: ‘No but it does happen to people like they feel they’re left out.(…)Today,(…)a doctor was explaining something to me and he was just about to leave and when he was just about to leave he said to my mum, “If you want to ask a question I can come back” so I kind of thought is he doing that because he doesn’t want me to hear my mother asking the question.’ (Sarah, FG2, line 612 & 619–622) |
Note: Rachel, Laura, Sarah, and Darren are pseudonyms (participants aged 11–15 years).