Based on the content of the analyzed study data generated, predominant barriers to
epilepsy care were summarized under three themes. Each theme is described and representative
quotes illustrating prevailing perceptions are reported in italics. A translator translated
all responses in the local language into English.
Three (3) major themes of barriers to epilepsy care emerged: (1) individual level
barriers, (2) family and community level barriers, and (3) health care system and
provider level barriers.
Individual level barriers In Table 1 themes, sub-themes, and key quotations illustrating the perceived individual
level barriers to epilepsy care are presented. We grouped these perceived individual
level barriers into the 5 subthemes reflecting personal issues, which our respondents
identified as barriers in epilepsy care: psychological, behavioral, knowledge, lifestyle
and functional impairment
Psychological distress symptoms were frequently reported by PLWE these included; sleep
disturbances, mood changes, stress, and post-traumatic stress disorder (PSTD). These
participants also reported poor appetite and low energy as well as living in a constant
fear of having a seizure.
Respondents reported long episodes of lack of energy after episodes of prolonged attacks:
When I get an attack, sometimes I can spend a whole week without energy. Respondent PR#5
For some, just living with the constant fear of having a seizure is so psychologically
stressful that it sometimes results in physical symptoms unrelated to the seizure
“With this illness, suddenly you feel like you are about to have an attack and then
get frightened and then the heart beats fast”. Respondent PR#1
The main two behavioral barriers to epilepsy care reported by the respondents were
non-adherence to anti-epileptic therapy and difficulties to seeking mainstream medical
care. Majority of the respondents reported that they were socially isolated. Some
followed the advice of traditional healers, which opposed the use of mainstream medical
“The reason why some people don’t swallow drugs, is that traditional healers say they
can treat every illness, so some patients seek treatment there and quit taking their
anti-epilepsy medication”. Respondent PR#19
Both PLWE and caregivers also reported an inability to seek modern medical care and
opt for traditional or cultural practices, which impact drug compliance
“. One could say that ancestral spirits cause the problem and then another person
will say that you stepped over charms trapped in the road; so you want to try everything
to heal as traditional healers treat the charms and misfortunes”. Respondent PR#4
Negligence from their caregivers was also reported as one of the leading causes of
“Her mother was negligent about her and would only remember about her from work in
the middle of the day and instead return in the evening and then give her both the
morning and evening dose at once”. Respondent PR#11
The study participants also reported reluctance to refill their drugs when feeling
“Well if someone uses medication and realizes that they have improved a little in two
months, they think that they have healed so they quit taking it”. Respondent PR#18
For the most part, participants identified the major causes of epilepsy as anger,
stress, trauma to the brain, and congenital (inherited/inborn) factors.
While some suggested that becoming angry would damage the brain and cause epilepsy.
“I think that it could be anger, where someone can get so angry that their vessels
swell. It could maybe damage the brain and then get that problem”. Respondent CG#2:
However, others reported that it is an inborn or inherited illness
“Some people are born with that illness. For others, I hear that it is a family thing
that they just inherit”. Respondent PR#1
Participants suggested that it is a result of brain injury or comes from the brain.
“In my childhood when I was still a baby, mum told me that someone was carrying me
and I accidentally fell down and spent the next 24 hours unconscious. Then when I
was four years old it started”. Respondent PR#5
However, some of the participants reported epilepsy as being contagious:
“Sharing things with people who are sick of seizures”. Respondent CG#3
While others felt it was because of spirits or witchcraft:
“Ancestral spirits, the first time I got the illness, I saw a ghost and had very long
hair and nails, and so I ran. When I looked behind, it waved at me and it was in that
night that the illness started”. Respondent PR#2
However, some PLWE and their caregivers did not know what caused epilepsy:
“There’s nothing I know about it but what I know is that it kills”. Respondent PR#17:
While a number of participants felt that epilepsy was preventable and curable:
“That one is preventable, you can prevent against that illness, the same way you do
it for HIV”. Respondent PR#3:
“That illness doesn’t have a right medicine to treat it. The doctor told us that the
medicine that we get to treat that illness only relaxes it but doesn’t cure it. It
doesn’t treat the illness to cure it for good”. Respondent PR#13
Alcohol use and financial constraints were reported as major impediments to epilepsy
care and control.
The study participants highlighted alcohol use as a major hindrance to epilepsy care
“Things got worse because when I took alcohol after swallowing the medicine, they
told me to stop” Respondent PR#2.
As well as being stressed/ashamed when they are talked about or when a seizure occurs
in front of family or friends.
“My biggest challenge is that I do not want to get an attack when my friends are around,
I would feel ashamed if am around many people”. Respondent PR#9
Limitations in self-care as well as participating in home and community activities
were also cited as barriers:
“Sometimes they say; she must not cook. She should never cook for us! What if she
falls in the food? Yet I am the one who cooks for the family” Respondent PR#2.
Participant cited financial constraints to meet the required basic needs and get medications
as a major cause of stress in their lives and was reported to be one of the barriers
to epilepsy care and management.
“There is stress about finding money and the children’s school fees also mixes in”. Respondent PR#10
Functional impairment and self-identity barriers
Caregivers highlighted the changes in mood and loss of self -identity in relatives
/friends with epilepsy which was attributed to epilepsy.
“She was easily angered, often started quarrels, and had a short temper. If you are
not her mother you cannot stay with her” Respondent CG#26
In summary, the greatest impediments to epilepsy care cited by the respondents were
stress and lack of knowledge regarding epilepsy and epilepsy care. However, other
personal barriers included mental health problems, challenges in seeking mainstream
medical care, anti-epileptic drug non-adherence, unhealthy lifestyles and functional
Family and community level barriers
Table 2 shows the family and community level barriers to epilepsy care with sub-themes
and illustrative quotes. Family issues, caregiver burden and lack of community support
were the three important subthemes cited by the respondents.
Lack of family support and stigmatizing behavior by immediate family members were
perceived as important barriers to epilepsy care:
“You have epilepsy so don’t touch my stuff”. Respondent PR#4:
A barrier to taking epilepsy medications was lack of support or reminders from the
“You could be living with someone who can’t even remind you to swallow your medicine
especially when you are still young”. Respondent PR#5
Several study participants reported insults or name calling from their family members.
“At school, I can get just one attack and then my colleagues isolate me. My friend
who used to help me, has stopped sharing a seat with me, they say that when they sit
with me I would infect them with epilepsy”. Respondent PR#11
Stigmatization from the community, as well as from family, compounded the lack of
support and increased isolation felt by PLWE:
“When you have this illness people isolate you a lot and people start saying, “There
is a way they call it that sounds so bad, “Epilepsy” or ‘epileptic’, I would prefer
a word like convulsions/seizures”. Respondent PR#1
Lack of community awareness
The study participants felt strongly that there was a lack of attention to educating
the community about epilepsy.
“People used to tell me, “that child is suffering from witchcraft all they advised
was trying out several traditional healers, “it seems those people (referring to us)
sacrificed that child to the gods’ that we used some dark magic which backfired or
that we sacrificed him and that that was why the child was getting those attacks”. Respondent CG#27
The study participants were quite vocal about the onerous burden faced in the day-to-day
efforts in caring for a PLWE. As shown in Table 2, the lack of correct information
about epilepsy care left most of caregivers to resort to ‘trial and error’ methods.
This was aggravated by changes in their roles, decreased household income, and increased
caregiver responsibilities, often resulting in physical and emotional stress for the
The burden of providing all basic needs in life and study participants cited performing
most of the chores for the patients.
“ I have to take care of her because most people find them (patients) disgusting because
when it attacks, they drip saliva. Some people think that it is contagious. Of course
I don’t feel good because my colleague (partner) who could have supported me, left,
am now the only one supporting her”. Respondent CG#26
Healthcare system and provider level barriers
Table 3 shows subthemes and quotes describing healthcare system and provider level
barriers to epilepsy care. Two important categories of barriers involving access to
health care issues and provider issues were identified.
Access to healthcare system issues
Limited health care provider interaction and distance to health centers were major
problems, see table 3. Health facilities were reported to be located far from patients’
homes and majority of people faced challenges in reaching these centers, as either
they did not own or had difficulties with out of pocket to meet the transport costs.
This was compounded by long waiting times to see a doctor and sometimes being triaged
to another hospital:
“I rarely skip a dose but there are times when I run out of pills and yet I don’t
have any money to come here. So you spend days before getting money to come here and
then skip some doses. Respondent PR# 10
Health care provider issues
Table 3 also displays barriers to receiving epilepsy care from health care providers.
In addition to appointment difficulties, poor attitudes towards patients, inadequate
diagnostic evaluation, and lack of follow up as well as poor written and verbal communications
Participants reported limited patient-health worker interaction at the health centers
“But they don’t give you much time. I used to have . . . dizziness, whenever I shared
it with the doctor, he would respond, “Just swallow your medicine.” When I returned
the following day with the same problem he said, “It seems you are not taking your
medication” and yet I was swallowing it. But now I am seeing other medicines that
I don’t even understand”. Respondent PR#2
The study participants reported strongly about the need for increasing epilepsy awareness
in the community as part of care and stigma reduction efforts. As shown in Table 4,
various ideas regarding how to disseminate epilepsy information like holding community
education meetings and seminars, door to door visits by health workers, engaging local
leaders to spearhead projects, as well as using print and local media to spread the
word about epilepsy.
“I only request the government to get us medicine that is for free”. Respondent #PR3:
“To some of us, this illness hinders us from working to raise money. The government
should help us and offer the medicine for free since this illness hinders one from
working to get money. How will you work if you have that illness?” Respondent #PR5
Participants suggested the creation of more facilities treating epilepsy to reduce
“If a fund is available, personally I think it doesn’t matter if they don’t give it
to us the people but they create more health facilities in different areas that attend
to people with this kind of illness”. Respondent PR#4
Some proposed refresher courses in disease management for health care providers.
“The care providers that treat us could be trained maybe some of them are just giving
out tablets but don’t know much about the illness”. Respondent #PR19
Participants reported that they should at least be screened before giving them AEDs
and change drugs given where necessary.
“They should change the medicine and also start testing us to know what kind of illness
is in your body”. Respondent #PR5:
Participants recommended that health care providers treat patients’ politely/well.
“The care providers should work on their manners too; if I speak to you calmly I don’t
want you to yell back. Care providers should work on that”. Respondent PR#3
Providing counseling and education to caregivers and family members was suggested.
“I think they should make a meeting with the people that we live with and give them
some counseling at first. For some patients that have said that they get stressed,
sometimes it is because someone (a caregiver) who yells at them or do other things.
So they should find a way of teaching them such that they learn how to handle that
patient”. Respondent PR#14
With a sense of being ignored by the community, study participants recommended a self-help
group approach amongst themselves as a way to lessen this sense of isolation felt