Table 1 Propositions post-hoc development

1

Age appropriate psychosocial-educational programmes for young people with epilepsy show potential in increasing medical knowledge and improvement in health related quality of life

2

Being educated and being knowledgeable about epilepsy empowers parents to be an advocate for their child

3

Being educated about epilepsy made parents realise what knowledge they did not possess and caused them to seek for more information

4

Young people need accurate information about epilepsy to aid psychosocial adjustment

5

Young people need practical advice about social lifestyle management but think that healthcare professionals are only interested in medical management of epilepsy

6

Parents need practical advice but think that healthcare professionals are only interested in medical management of epilepsy

7

Young people do not receive the right information, at the right frequency and at the right time during their teenage years

8

Young women are not consistently receiving or remembering gender specific advice

9

Misinformation leads to misconceptions and uncertainty about epilepsy, and inability to cope with stigma

10

To be able to self-care and be independent of their parent, young people realise they need to know more about epilepsy to take responsibility

11

Young people do not know HOW to ask questions about their epilepsy

12

The clinical encounter mainly acts as a barrier to information exchange

13

Healthcare professionals lack facilitative skills of working in partnership with young people, with or without their parent present

14

Lack of effective partnerships and interruptions of care are having a detrimental effect on information exchange and knowledge use by young people

15

Parents are unaware of what epilepsy knowledge they do not have