Table 1 Participant characteristics
Participant | Child Gender | Interviewee | Carer | Income | Carer Education | Diagnosis | Clinical Summary |
|---|---|---|---|---|---|---|---|
P01 | M | Mother | Mother | 125+ | Bachelor Degree | Lennox-Gastaut Syndrome | Initial benefit, then lost |
P02 | F | Mother | Mother | 75-100,000 | Vocational Training | AICARDI Syndrome | No difference seizures, better alertness |
P03 | M | Mother | Mother | 25-50 | Vocational Training | Lennox-Gastaut Syndrome | No difference |
P04 | M | Foster Father | Foster Father | 75-100 | High school | Lennox-Gastaut Syndrome | Better seizures and awareness |
P05 | M | Father | Father | Less 25 | High school | Refractory epilepsy | Better seizures |
P06 | F | Mother | Mother | Less 25 | Vocational Training | Refractory epilepsy, unknown | No benefit |
P07 | M | Mother | Mother | 125+ | Post Graduate | Refractory epilepsy, idiopathic | Better - seizures reduced |
P08 | M | Mother, Father | Mother | 125+ | Bachelor Degree | Dravet Syndrome | Nil benefit |
P11 | F | Mother | Mother | 125+ | Vocational Training | AICARDI Syndrome | No benefit from seizures - more alert |
P12 | M | Mother | Mother | Less 25 | Vocational Training | Dravet Syndrome | Nil benefit |
P13 | M | Mother, Father | Mother | 75-100 | High school, Grade 11 | Landau-Kleffner Syndrome, Pseudo-Lennox Syndrome, Continuous Spike Wave Syndrome | Side effects - no other benefit |
P15 | M | Father | Father | 125+ | Post Graduate | Dravet Syndrome | Better - seizures/alertness |
P16 | F | Mother | Mother | 25-50 | Vocational Training | Dravet Syndrome | Better |
P17 | F | Mother | Mother | 125+ | PhD | Refractory epilepsy syndrome | Better in alert - seizures ISQ |
P18 | F | Mother | Mother | 50-75 | High school | AICARDI Syndrome | Better between seizures - seizures ISQ |
P19 | M | Mother, Stepfather | Mother | 25-50 | High school | Genetic epileptic encephalopathy | Better - alert |
P20 | F | Mother | Mother | 50-75 | High school, Grade 9 | Miller-Dieker Syndrome | No benefit |
P21 | M | Father, Mother | Mother | 125+ | Bachelor Degree | Dravet Syndrome | Better seizures/alertness |
P22 | F | Mother | Mother | 100-125 | Vocational Training | Refractory epilepsy, undefined | Better seizures/alertness |