Table 2 Descriptive themes and sub-themes, with stages relative to transition at which they emerged

Navigating information with help from parents

Parent

0,1,P

Translates treatment experiences; interpreting clinical advice for young person.

0,1,X,P

Retains informed overview of ADHD as a condition; holds understanding of young person’s potential long term treatment needs often when young person cannot; can guide treatment decision.

0,1,X,P

Persistently seeks service information necessary to continue access to care.

0,1,P

Navigates and manages administrative information on behalf of young person; for example helping record appointment dates, and locate service addresses.

X,P

Attempts to access information and signposting to services through General Practitioner (GP); often without success.

1,X,P

Coaches/supports young person in navigation of administrative information; helping them practice information management strategies.

0,P

Role effectiveness limited by parent’s understanding of ADHD and knowledge of service provision.

Young person

X

Seeking information necessary to access care is impossibly difficult.

X

When asked GPs do not provide appropriate information.

X

Communicating with adult services is difficult and distressing.

Information on ADHD into adulthood

0,1,P

Informed will definitely grow out of ADHD; unhelpful and inaccurate.

0

Limited information provided about condition; good start but many want to know more.

0,1,P

No information given.

1,X

Told might/might not grow out of ADHD; starts process of self-reflection.

1,P

Understands long term support may be needed; thinks about future care.

1,P

Sufficient information provided; develops a nuanced understanding of long term care needs.

0,X,P

Wants information about ADHD as a condition to come from experts (clinicians); relying on parent not sufficient.

Information about the transition process

0,1,X,P

No transition information provided; one young person did not mind, many felt left ‘in the dark’.

0

Basic information provided, that transition may happen.

0,1,X,P

Insufficiently detailed information provided to enable young person to prepare for transition.

1

Sufficient information provided; emotional comfort and confidence in transition process.

0,1,X,P

Relies on information from informal sources; often worrying, which causes distress.

1,X

No contact point for information during transition, or when out of services; highly distressing.

X,P

No information on how to re-enter services as adult; a barrier to accessing care.

1,X,P

GPs are key point of contact; but inconsistent and confusing sources of information, leading to difficulties accessing care and emotional distress.