Table 2

Summary of what worked, how it worked, for whom and in what context
What works How it works (behavioural response) For whom In what context
Multidisciplinary team and joint care in a single combined clinic between children and adult epilepsy services involving paediatrician, neurologist and epilepsy nurse, including: Young people do not experience the significant change in care pathway, professionals, philosophies and frequency of clinic visits Young people aged between 14-17 years In Case 2
Reviewing Epilepsy and drug management early in transition Young people and parents felt that they were having consistent coordinated expert care, and continuity of epilepsy care Parents Joint care between children and adult epilepsy services facilitated in children’s out-patient department of a hospital
Enabling young people to know and engage with adult healthcare professionals via children’s healthcare professionals Young people were more actively involved in discussion about epilepsy with healthcare professionals NHS care free at the point of delivery
Person-centred communication techniques Young people and parents responded positively to healthcare professionals using age-appropriate facilitative skills Specifically commissioned teenage transitional clinic from age 14-17 years (Case 2)
Continuity of care at staged intervals Young people gained a more realistic prognosis and became more accepting of epilepsy as a long-term condition Out-patient clinic meeting every 6 months
Continued contact with children’s services during transition Young people felt the joint clinic in children’s services was a safe environment
Young people did not feel worried that healthcare professionals in adult services were going to change their anti-epileptic drugs
Healthcare professionals in children’s services befriending young people and making it easier for them to not be intimidated by adult healthcare professionals
Attending the clinic at frequent intervals with their parents if the young person wanted.
Increase self-confidence to self-care and manage epilepsy
Being given age-appropriate information Greater understanding about epilepsy as information is repeated at frequent intervals and helps overcome some but not all memory impairment Young people aged 14-17 years Children epilepsy clinic in Case 1 and Case 2
Healthcare professionals being responsive to the developmental age of the young person Making links with experience of seizures (what triggers seizures) Joint care between children and adult services Case 2
Improves self-care by learning practical skills
Continued checking understanding of epilepsy, lifestyle adjustment and medication management at repeated intervals Improves self-management by improved concordance with medication Young people aged 16-19 years Adult epilepsy clinic Case 2
Parents
Healthcare professionals being receptive to young people’s varying levels of information needs throughout their teenage years Taking responsibility increases chance of being given more independence Young people aged 16-19 years Routine children and adult NHS out-patient epilepsy services
Parents Irrespective of Case or clinic model or frequency of visits
Addressing biological, psychological, educational needs in healthcare contexts Young people responded positively to strategies to improve retention of information – such as repeated information even if it annoyed them. Young people aged 16-19 years Adult epilepsy clinic Case 2 and
Early identification of memory problems and referral to neuropsychology They experienced improved psychological coping strategies (especially at school/college) Parents Children’s epilepsy clinic Case 1
Early identification of psychological problems and early access to psychological services They felt an Increase in self-confidence
Support and advice for parents to encourage their child to safe self-care Healthcare professionals were receptive to the individual information needs of parents and proactively responded should their child’s epilepsy change Young people aged 14-17 years Children’s epilepsy clinic Case 1 and Case 2
Providing accurate advice and information about epilepsy in lay language Parents liked the emotional support as well as practical advice from healthcare professionals Parents Joint care between children and adult services Case 2
Providing a realistic prognosis of epilepsy as a long-term condition* Parents responded positively to opportunities to access to parental support groups to learn from other parents Adult epilepsy clinic Case 1 and Case 2*
Parents self-confidence increased to enable their child to take responsibility

* means only seen in case 2 referring to * in column 4.

Lewis and Noyes

Lewis and Noyes BMC Pediatrics 2013 13:169   doi:10.1186/1471-2431-13-169

Open Data