Table 5

Children's, young people's and parents’ priorities for care*

‘Bad’ care‘Good’ care
Children's and young people's concern with maintaining social health
“[Re-injecting at school]: I wouldn't want everyone else looking at me like I've got half a face or something.” (Boy with diabetes, 12 years, Waller et al,17 p.286)
The wish for secrecy had resulted in some people refusing to take medicines [at school].” (Smith et al,27 p.541)”
My daughter feels that having diabetes does not mean she has to hang out with others who also have diabetes.” (Christie et al,20 p.391)
“… whereas carers viewed formal education favourably, young people were less enthusiastic.” (Allen et al,14 p.144)
Think about it. [Intensive therapy] could make us as normal as a normal person without diabetes.” (Boy, 12 years, Waller et al,17 p.286)
She doesn't like being questioned a lot… especially about her diabetes…” (Parent, young person, Smith et al,27 p.541)
I went to Iceland on a school trip but it was fine… My form tutor… was fine with it. For some children he looked after the medication but he let me look after mine.” (Young person, Smith, et al27 p. 542)*
Children and young people want clinicians who know them well
I think what's really stressful is that a lot of people don't see the same health professionals each time… it makes you not want to go [to clinic because] it doesn't really matter if you go or not because if you see a new doctor you can't use his advice because he doesn't know what to advise you about, because he doesn't know you.” (Greene,29 p.53)
She said you should do this and that and she was reading from a text book [but] it's in a text book and it might not exactly apply to me. I might do all that and end up coming into hospital.” (Dovey-Pearce et al,28 p.409)
Sometimes the endocrinologists lose track of the practical side… they say ok, put some more insulin in your body, without even bothering to ask why they're high.” (Greene,29 p.54)
[CYP and parents wanted] an ongoing therapeutic relationship… in which HCPs understand the fabric of individuals’ lives.” (Allen et al,14 p.143)
You have to get to know the patient on a personal level before you can kind of tailor advice for them.” (Price et al,22 p.858)”
… go and speak to the nurse, get to know them, build up a relationship with them. You know, like practical things you can use in your life.” (Greene,29 p.56)”
[Children and young people and parents want] any episodes of deterioration in control … understood in the context of the individual's care trajectory rather than as non-compliance.” (Allen et al,14 p.143)
Children and young people's strong preferences about clinicians’ style of interaction
You're talking to humans.. people, and people kind of forget that.” (Price et al,22 p.858)
I have this one doctor that kept telling me that it was my fault…that's stayed with me, the guilt… you feel like giving up.” (Greene,29 p.54)
Going to the doctor is a bit like going for a test. You either pass or fail and you're relieved when it's over…” (Greene,29 p.54)
[The doctor] used to talk to me like I was a baby [and] to my mum as though I wasn't there.” (Dovey-Pearce et al,28 p.414)
[At home] children saw themselves as active, reliable contributors to care alongside mothers… in clinic [they] felt peripheral.” (Curtis-Tyler,30 p.1306–7)
… I was going to stop going altogether to appointments… and I enjoyed going after meeting him ‘cos of the way he treat us.” (Price et al,22 p.859)
I think you need positive reinforcement that you can carry on doing what you need to do.” (Greene,29 p.52)
You need to be offered the opportunity to learn about the process, the trial and error…” (Greene,29 p.52)
Clinicians give different impressions. With some you feel they don't really want you to be there and with others they really want to know about you.” (Greene,29 p.54)
I only had him for a few appointments but he's so down to earth and treated us like an adult.” (Price et al, 22 p.859)
Children and young people want opportunities to set the agenda and have choices
“Some clinicians are happy hearing about the… more human side of life. Others behave like the godfather of medical things. Its more abstract and its harder to speak about your situation.” (Greene,29 p.54)
[Doctors are] often more focussed on your doses or how many times you test your blood sugars, and that's not really what I come for.” (Greene,29 p.54)
[Young people] did not understand why there was an emphasis on HbA1c at the expense of issues of concern to them such as how to integrate self-care into their daily lives.” (Eiser et al,16 p.225)
Young people wanted staff to be less abstract when giving information and take into account their individual lifestyle.” (Eiser et al,16 p.225)
You need to be offered the opportunity to learn … how you cope with sports, relationships, exams, family problems which the speciality doesn't always understand.” (Greene,29 p.52)
I came in with a very high HbA1c. I knew it was bad. She [clinician] knew it was bad. She said, OK so that's not so good, so why do you think it's so high? And what do you want to do to start changing it? instead of like my old doctor, who might say something general like you need to eat less’… she asked, where to do you think the best place to start because you can't do it all at once. She let me pick my target for what I thought I could do, which was higher than the clinic recommended… She was reassuring because she said, Well that's good, because it's a lot lower than you have now.” (Greene,29 p.52)
Those that promoted a sense of partnership and collaboration in the consultation were most highly regarded, while those that tended to be based around a ‘set agenda’ were not… while the physical environment and other elements did matter these results suggests the centrality of personal interactions.” (Price et al,22 p.857–8)
I thought the paediatric consultants were brilliant at talking to him… ‘it's up to you’ and then look at him.” (Mother of 12-year-old boy with diabetes, Williams et al,12 p.160)
Mothers and fathers valued service responsiveness and coordination of care
It was me who pushed for [young person] to go … on four injections and they weren‘t happy when I … I pushed and pushed and pushed for it. (Mother of 9-year-old boy, Williams et al,12 p.157)
There is a clear need to develop service structures that recognise the continuing role played by mothers in the diabetes care of young adults.” (Allen et al,13 p.994)
You were there when we needed you… you came round when we needed you… you were at the end of the phone at the end of the day. If I was worried I could pick the phone up. So. I was afraid of feeling very isolated, but no, I haven't felt isolated at all. Quite the reverse actually. There has been somebody there if I've needed them.” (Mother 7, daughter 9 years with diabetes, first interview; Lowes,32 p.534)
I had a word with the school nurse and the dose has been changed. She's stopped taking it at school now.” (Parent, young person with diabetes, Smith et al,27 p.541)
“[One] young child (9 years) read the Tadpole Times (Diabetes UK) and found out that he could have multiple doses of insulin and he decided to negotiate with the Doctor for a change of regime: ‘He‘s sort of told Dr [C] and Dr [C] was like oh okay (laughs) fine yeah and so it was a decision he made.” (Mother of 10 year old with diabetes—father also has diabetes; Williams et al,12 p.148)
  • *Quotations are selected to illustrate the range of issues raised. See online supplementary appendix 6 for all data extracted across studies. Italicised quotations are direct speech quoted in the study, and roman text is reported by the study author.