Being parents with epilepsy: thoughts on its consequences and difficulties affecting their children

Figures & data

Table 1 Patients with epilepsy (n=16), clinical information

Sex (M/F), age (years)	Classification	Etiology	Duration of epilepsy (years)	Approximate seizure frequency	AEDs, n	Brain surgery (yes/no)	VNS (yes/no)
F, 35	Focal seizures with impaired consciousness, convulsive seizures and psychogenic non epileptic seizures	Unknown	13	Focal and convulsive seizures every week	4	No	No
F, 32	Focal seizures with impaired consciousness and convulsive seizures	Tumor temporal left	5	Focal seizures every week. Convulsive seizures every month	3	Yes	No
F, 30	Focal seizures with impaired consciousness and convulsive seizures	A-V malformation, frontal left	3	Focal seizures every week. Convulsive seizures every month	1	No	No
F, 21	Focal seizures with impaired consciousness and convulsive seizures	Unknown	5	Focal seizures every week. Few convulsive seizures	3	No	No
F, 26	Focal seizures with impaired consciousness	Mesial temporal sclerosis right	19	Focal seizures every week	1	No	No
F, 25	Focal seizures with impaired consciousness and convulsive seizures	Mesial temporal sclerosis right	18	Focal seizures every month. Convulsive seizures every year	2	Yes	No
F, 29	Focal seizures with impaired consciousness and convulsive seizures	Mesial temporal sclerosis right	22	Focal seizures every week. Convulsive seizures every year	3	Yes	No
M, 32	Juvenile myoclonic epilepsy	Genetic	17	Convulsive seizures every year	4	No	Yes
M, 33	Focal seizures with impaired consciousness and convulsive seizures	A-V malformation occipital right	9	Focal seizures every month	2	Yes	No
M, 24	Focal seizures with impaired consciousness	Glios, temporal-occipital left	15	Focal seizures every week	4	Yes	Yes
M, 23	Focal seizures with impaired consciousness and convulsive seizures	Suspect tumor temporal right (normal)	1	Seizure-free last year	1	Yes	No
M, 20	Focal seizures with impaired consciousness	Cavernous hemangioma temporal left	4	Focal seizures every week	3	No	No
M, 32	Focal seizures with impaired consciousness	Mesial temporal sclerosis left	24	Seizure-free last year	2	Yes	No
M, 29	Focal seizures with impaired consciousness and convulsive seizures	Status post encephalitis	15	Focal seizures every month. Few convulsive seizures	4	No	No
M, 55	Generalized epilepsy	Unknown	54	Convulsive seizures	1	No	No
M, 52	Focal seizures with impaired consciousness and convulsive seizures	Gliosis temporal right	35	Focal seizures every week. Few convulsive seizures	2	No	Yes

Abbreviations: AED, anti-epileptic drug; A-V, arteriovenous; F, female; M, male; VNS, vagus nerve stimulation.

Table 2 Example results of analytical procedure used

Text from interview	Condensation	Interpretation	Theme
“I really feel like the worst mum. I am feeling bad when I have a seizure and since I have this seizure my children must take care of themselves, just because I am feeling bad. I have a guilty conscious of this”	When she has a seizure the children have to take care of themselves. She feels guilty for her children and blames herself for this	The seizures prevent her from taking care of her children in the way she would want to do and this causes guilt	A feeling of guilt, not being able to fulfill your expectations of being the parent you would like to be
“I feel like I am not really grown up. I can not even walk with the stroller. It is like I am underage. It should not be just me and my child at some occasion. But it hurts, that I cannot and should not take the full responsibility”	He does not feel grown up since he cannot always take care of his child by himself. It hurts since he would like to take full responsibility as most parents do	He feels inadequate since he cannot take full responsibility for his child in all situations	A feeling of inadequacy, not being able to take full responsibility for one’s child