Table 2 Theme 2. Sharing information with young people

About the transition process

Timing: the age at which clinicians started sharing information about transition with patients varied from starting at age 13, to just before age 18. Timing varied depending on multiple factors, such as available clinic time, the ‘readiness’ of the patient, and usual practice of the clinician. The majority reported starting around age 16/17, though some reported changing their practice recently to start talking about transition earlier.

“…some of these families are just moving from crisis to crisis and the appointment is spent more trying to support them through the crisis or specific difficulty meaning that there’s less time to talk about transition or plan the transition. I think my personal practice at present is that it’s been quite late.” (Paediatrician 20)

“It depends, you estimate what their trajectory is going to be partly depending on their functioning and all their other needs and their academic engagement, family engagement, their history, their responsibility so it depends on the young person’s needs.” (Child Psychiatrist 08)

“So from a much younger age I’m now talking about this. … about 2 years ago so I was seeing cases that were 17 and a half where there had been no discussion about what was going to happen to them in adulthood. … So none of those conversations had been had so I had to very quickly go through that. But now I’m having those sorts of conversations from a very young age…” (Paediatrician 05)

Content: details provided to patients varied from none, to clear descriptions of the process. Where local transition programmes were in place, clinicians reported detailed discussions. Where clinicians felt uninformed, they were unable to provide patients with clear information.

“So we've implemented Ready, Steady, Go here which is a transition programme from 13 onwards, kind of discussing transition with younger people from the age of 13 if we think they're going to be transitioning to adult services.” (Paediatrician 05)

“I think sometimes we feel that we haven’t got much information to give a young person and parents because we don’t really… apart from knowing that there’s not much out there, we are not really fully informed about what other support they might be able to access.” (Paediatrician 19)

Signposting: several clinicians reported signposting young people on how to access adult healthcare, usually via their general practitioner (GP). This was described as a vague process, with an acknowledgement that they could be clearer.

“...the advice is usually… because it could be anytime in their future, that their GP is their portal and knowledge of the services and that’s the best place to start.” (Child Psychiatrist 06)

“I've certainly pointed them in the direction of the Adult Service already in the discussions so maybe I could be more explicit, I’m implicitly explaining that the family doctor would then be responsible…” (Paediatrician 18)

Expected differences in AMHS: informing young people and their parent/carers about differences between child and adult healthcare services when approaching transition was important. It could help manage anxiety, and prepare families for differences in information sharing practices. Several clinicians noted that young people might need more organisational support from parent/carers when in AMHS than previously in child services.

“The biggest thing that young people have fed back to us is that they are just nervous about the differences. …so we kind of wanted them [AMHS] to write that out and sort of say you will see your doctor for medicine and this is when you will see your team worker and you will see them there or you see them there.” (Child Psychiatrist 13)

“… we had a bit of a bad experience with one who was expecting the same service as they were getting from us….And they were quite irritated that they didn't and now I'm making it clear to patients ….They will only manage the ADHD. So I've made that much clearer now ... (Paediatrician 05)”

“So it is an issue for the 18 to 25s I must say because they've suddenly got to go from the detailed support to very limited and dependent on parents much more.” (Paediatrician 12)

About self-management

Discussing the future: some clinicians saw talking with patients about living with ADHD as a long-term condition as a key part of transitional care. These discussions helped to engage with the young person and helped them to think about self-management and possible future challenges. Others thought that they did not have the expertise to provide this kind of information, or said a specialist nurse or support group might be better.

“I talk with them about their hopes and plans and aspirations and the need to take medication. (Paediatrician 17)”

“So we would normally start that conversation and say ‘Right we’ve reached the conclusion that you meet the criteria for ADHD’ and then we’d say ‘And this is what it is’ and that would include long-term outcomes and prognosis and lifespan type discussions which we then just come back to every time we see them… So it’s ongoing.” (Child Psychiatrist 08)

“We’ve tried to maintain contact and engagement over time and then in those youngsters there would be some that seem to be coping well and developing self-management strategies and we hope through running a teenage group to sort of help them understanding their own needs and self-management.” (Paediatrician 16)

Healthcare into adulthood: some clinicians encouraged young people to engage with decision-making about their care; a part of helping them learn to make informed choices. Some said that if teenagers questioned their treatment, it could be an opportunity to start to educate and engage them in self-management. A few emphasised approaching these conversations as a dialogue.

“I don’t actually think that I have the level of expertise to really give an authoritative answer.” (Paediatrician 21)

“The specialist nurse is fantastically good with younger adults, I feel a little bit lost.” (Paediatrician 15)

“Try and help them understand that it often does help in college and that they don’t have to take it… they can take it on a flexible basis, … and so take things more into their own hands. So yes, we always have that conversation.” (Child Psychiatrist 01)

And they start kicking off a little bit and saying 'I don't want to take it'. So then I use the opportunity to have a discussion about 'Okay why are you on this medication? Are you going to be on it for a long time? And if not what are the alternatives? …And I kind of give them my approach up to medication.” (Paediatrician 05)

There’s no point in trying to persuade a young person to take medication against their wishes. ...it’s a dialogue, isn’t it? You have to have a kind of to and fro and involve young people. (Paediatrician 04)

Self-management: clinicians said that information exchange with young people about ADHD in adulthood was key to help them learn to self-manage; however, this was often difficult to do in the clinical time available.

“And one of the opportunities about ADHD is you get the chance though for years to be able to chat to young people and give them more control and more power over it and that helps them to see it just as part of them, that they can get on with and manage. So I think that’s an important bit. It’s the transition within the young person’s development I think is very important.” (Child Psychiatrist 06)

To support engagement

Joint meetings: including patients in joint meetings with child and adult mental health services was described as an effective way to make information about transition accessible to the young person, and ease anxieties. Joint meetings were only offered in a few cases.

“…when I do handovers of other sort of patients to the Adult Psychiatrist I offer to do joint appointments and most of the kids seem to quite like that as part of the handover. So yes…”

Information resources: provision of information resources, such as leaflets, or website links, was variable, and often not ADHD specific. Some clinicians expressed frustration at the lack of quality information resources available, observing that mixed media and online information would be most acceptable for young people.

“We have transitional leaflets and information leaflets for the families that I can give them anytime from 16…” (Child Psychiatrist 03)

“…we haven’t got anything around ADHD specifically but we’ve got a couple of very good autism self-help resources in XXXX [local service].” (Paediatrician 11)

“But no, we don’t have anything really good to hand… sort of written information about adult services. .... We don’t have a website, adults don’t have a website. Our young people actually would probably prefer even… they look a bit horrified when you hand them booklets these days. [Laughs] They all want to go online and google it and stuff like that.” (Child Psychiatrist 13)

Allocated person: the majority of clinicians identified that having an allocated person for contact and information could play a vital role in ensuring a good flow of information to the young person and their family through transition. This could be a specialist nurse, or support worker.

“…allocated a social worker from adult services as they were coming up towards transition who then was really quite helpful in terms of supporting the young person, giving them advice about ...different things they could use to help themselves, organise themselves and so on and so forth.” (Paediatrician 09)

Accessible communications

Content and timing: timing for discussing transition varied. Many clinicians tailored the content and timing of information they shared to make it more accessible, depending on the young person’s situation, and perceived readiness.

“…it depends on the young person’s needs and normally we know them quite well by that age.” (Child Psychiatrist 08)

“…so it depends when we think it’s the right time to have that conversation … I think it’s very much if an individual is not triggered necessarily by a particular age you take it as it comes.” (Paediatrician 16)

Support with understanding: young people with ADHD often need additional support in navigating information, including key information about transition. Meetings across services helped assisting with this.

“With any luck, if you give them the information somewhere it will sink in and if things do go wrong they’ll come back.” (Paediatrician 11)

“Ideally, the first appointment would be a joint handover...Because it’s impossible to get all the information on the forms and stuff like that, isn’t it, so I think sometimes just being in the room can help a little bit and you maybe remember stuff better than the young people.” (Child Psychiatrist 13)

Including parents/carers: parents and carers frequently play a key role in helping young people to navigate and take in healthcare information. This could cause difficulties at transition, especially as AMHS do not routinely include parents/carers in communications.

“…they all nod and say 'uh huh' but it tends to be the parents who take on that information more.” (Child Psychiatrist 08)

“Well usually both of them [parents and young people]. … They seem to be quite comfortable not to speak to us on our own.” (Paediatrician 15)