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 |