Table 4 Categories and subcategories extracted from the interviews conducted in the fieldwork phase

Insufficient knowledge about the disease

Poor disease management

I don’t know much about epilepsy, nor any information about it, nobody told us anything (Participant 12).

Inadequate knowledge of care delivery

Low information on the disease

Low information on the nature of the disease

Increased financial burden due to epilepsy

Limited care ability because of financial problems

We have always had a problem with the costs of drugs. At first, my husband did not buy the drugs at all and always fought with the doctor. When we visited the doctor’s office, the visit cost was very high, the brain scan cost was very high, and we always had problems; they did not give a discount (Participant 1).

The need for financial support

Struggle to afford costs

Limited financial ability

High treatment costs

The need for support

The need for support from other organizations

I would like to have a place for mothers and children who have epilepsy, where people would go to them. When I see my own gender with the same suffering and the same problem I seem to feel more relaxed. (Participant 5).

Difficult access to drugs

Continuous need for treatment follow-up

The need for understanding from the spouse

The need for advice

Caregivers’ psychological concerns

Desperate to improve conditions

We always worry that anything might happen God forbid because a similar case was in our village who died, I am too worried that the same thing might happen to my child. I always have a guilty conscience. I wish I could have taken more care of my child before not to see like this (Participant 2).

Constant guiltiness

The inner torment of having a sick child

Occurrence of stress reactions in the mother

Mental exhaustion of parents

Tension in siblings

Vulnerable family

The need for high patience

I begged God for high patience, I say, God, give me patience to bear this way, not to beat, not to bother, and not to stretch out my hand to bat this child (Participant 11).

Unwanted changes in the family atmosphere

The need for a calm atmosphere in the family

Trying to maintain stability in the family

Concerns related to the child’s physical health

Fear of unwanted happenings to the child

Wherever my child goes, he/she wants me to follow him/her. For example, when he/she goes to school, I take him/her, and I follow him/her wherever he/she goes.

Fear of the unknown

Concerns about the child’s condition