Table 1 Perceived personal level barriers to epilepsy care

 Psychological distress/PSTD

“What causes stress is when you get the attack in the presence of your employer and then he tells you, “don’t come to work tomorrow; I don’t want you to die from here.” And remember you need children’s school fees and all the necessities at home. So you end up feeling stressed whether or not you want”. Respondent PR#1

 Resistance to seeking health care

“Personally when I had just started my medication, we always argued with my parent at home; I always told her, “I am not an HIV patient to swallow pills daily.” I would get attacks but I didn’t want to swallow medicine. The doctor counseled me, I am now going to two years without a single attack”. Respondent PR#7:

 Medication Non-adherence

“One might be swallowing the medicine and then someone comes out and advises them to try something else, so they quit the medicine.” Respondent PR#4

 Causes

“It seems that thing (illness) is just sent by someone. The way I see this illness, there could be someone who sent it”. Respondent PR#2:

 Cure and prevention

“That illness isn’t curable. But he has been swallowing medicine for close to 22 years now but he’s still on that medication. These drugs that they give us only enable us to live on”. Respondent PR#8

 Alcohol

“I learnt how to booze from school. So amongst us there could be someone who takes alcohol, but that medicine must not be mixed with alcohol. That is what I learnt”. Respondent PR#3

 Financial constraints

“My mum was working as a nurse but she was forced to retire, but no one supports us. It is mum who has to find money and yet she doesn’t work anymore. We don’t have any support; we just hustle”. Respondent PR#2

Functional impairment barriers

“When he gets an attack, he can spend like three or four days when is just seated at home; he never has any energy or talks.” Respondent CG#24