Author's personal copy

Epilepsy & Behavior 14 (2009) 645–650

Contents lists available at ScienceDirect

Epilepsy & Behavior

journal homepage: www.elsevier.com/locate/yebeh

Adherence and complementary and alternative medicine use among Honduran

people with epilepsy
Reyna M. Durón a, Marco T. Medina a, Orlinder Nicolás b, Francis E. Varela b, Francisco Ramírez c,
Sean J. Battle d, Arnold Thompson c, Luis C. Rodríguez c, Conrado Oseguera b, Rafael L. Aguilar-Estrada b,
Susan Pietsch-Escueta e, Julianne S. Collins d, Kenton R. Holden d,f,*
a
Neurology Training Program, National Autonomous University of Honduras, Tegucigalpa, Honduras
b
School of Medical Sciences, National Autonomous University of Honduras, Tegucigalpa, Honduras
c
Secretary of Health, Tegucigalpa, Honduras
d
Greenwood Genetic Center, Greenwood, SC, USA
e
Epilepsy Foundation of Greater Los Angeles, Los Angeles, CA, USA
f
Departments of Neurosciences (Neurology) and Pediatrics, Medical University of South Carolina, Charleston, SC, USA

a r t i c l e i n f o a b s t r a c t

Article history: Adherence to antiepileptic drugs (AEDs) and use of complementary and alternative medicine (CAM)
Received 21 November 2008 among Hondurans with epilepsy were evaluated. Our epilepsy cohort of 274 outpatients was surveyed
Revised 19 January 2009 to determine demographics, epilepsy treatment history, adherence, and use of CAM. Nonadherence to
Accepted 29 January 2009
epilepsy therapy was reported by 121, with unavailability of AEDs (48%) the most common reason.
Available online 4 February 2009
CAM was reportedly used by 141, with prayer, herbs, and potions being common. Forty-nine rural Mis-
kito Hondurans without epilepsy were also interviewed to gain an understanding of their beliefs and
Keywords:
longstanding practices regarding epilepsy. Seventeen (34.7%) attributed epilepsy to the supernatural;
Adherence
Compliance
only three knew of an AED. Widespread nonadherence to evidence-based epilepsy treatments in Hondu-
Complementary and alternative medicine ras can be attributed to inadequate education, AED unavailability, insufficient resources, cultural beliefs,
Low resources and wide use of CAM. A comprehensive epilepsy education program and improved access to evidence-
Honduras based AEDs represent initial priorities to improve the Honduran epilepsy treatment gap.
Seizure ! 2009 Elsevier Inc. All rights reserved.
Epilepsy
Miskito
Developing country
Treatment gap

1. Introduction ability of medications, unwillingness to use medications, and eco-

Epilepsy is a stigmatizing neurological disorder that often pro-
duces significant physical, psychological, and economic burden on
individuals and families [1,2]. Problems associated with epilepsy
are only further exacerbated when patients fail to adhere to guide-
lines for antiepileptic drug (AED) use and other treatments. Not only
do nonadherent patients endanger their own health and mortality
[3], but a recent study found that they also place a larger economic
burden on the health care systems because of recurrent seizures [4].
Studies in high-resource and low-resource countries report nonad-
herence to antiepileptic drug treatments in up to 50% of all people
with epilepsy [4,5]. Reasons for nonadherence include the unavail-
* Corresponding author. Address: Greenwood Genetic Center—Mt. Pleasant
Office, Post Office Box 1047, Mt. Pleasant, SC 29465-1047, USA. Fax: +1 843 216
5558.
E-mail address: kholden@ggc.org (K.R. Holden).
nomic difficulties that make the medications difficult to afford. In
many countries, the belief that epilepsy has a spiritual, environmen-
tal, or psychological cause, rather than being a primary disorder of
the brain, also contributes to inadequate treatment, adherence is-
sues, and a greater dependence on alternative treatment [6–8].
The Central American country of Honduras is a low-resource
nation where patients with epilepsy experience all of the afore-
mentioned difficulties. There appeared to be a lack of data on
AED adherence and complementary and alternative medicine
(CAM) use in Central Americans with epilepsy based on our initial
clinical observations in the Hospital Escuela Neurology Clinic at the
primary tertiary-care teaching hospital at the National Autono-
mous University of Honduras (UNAH), Tegucigalpa Honduras.
Therefore, we developed an epilepsy survey and initially pilot
tested it in the Hospital Escuela Neurology Clinic population. The
pilot data from this limited initial survey have been published
[9]. As we report in this current study, we then undertook exten-

1525-5050/$ - see front matter ! 2009 Elsevier Inc. All rights reserved.
doi:10.1016/j.yebeh.2009.01.022
 Author's personal copy

646 R.M. Durón et al. / Epilepsy & Behavior 14 (2009) 645–650

sive field interviews throughout Honduras over 21 months, using
our epilepsy survey to gain an understanding of Honduran epilepsy
demographics, whether and why Hondurans are adherent or non-
adherent to prescribed therapy, and what types of CAM are being
used. As part of these field interviews we also included the cultural
attitudes and beliefs that people without epilepsy from the Hondu-
ran Miskito tribe people had with respect to patients with epilepsy
and their treatments.
With the aim of improving the diagnosis, treatment, and pre-
vention of epilepsy in Honduras, it would be beneficial to under-
stand the knowledge base and treatment practices for epilepsy
from the perspective of both medical clinic outpatients and people
without epilepsy from urban and isolated rural areas. Contrasting
views, especially if they are from people of different Honduran eth-
nic/cultural backgrounds and values, will help to expand opportu-
nities to improve epilepsy care in Honduras.
2. Methods
the outpatient clinics involved authorized the survey to be con-
ducted with only verbal consent since patient identifiers were
not required. The questionnaire was then used in a nationwide sur-
vey of people with epilepsy seen in private and public clinics in 12
of 18 departments (‘‘states”) (Fig. 1). The questionnaire was admin-
istered after receiving verbal informed consent from patients and/
or their primary caretaker(s). As much as possible, surveys were
self-administered, but patients could choose to have the question-
naire administered by someone else such as health clinic person-
nel. Patients were not required to answer any questions they did
not feel comfortable answering. Because of the illiteracy secondary
to low educational levels of patients in several communities sur-
veyed, we could not totally avoid questionnaire administration
by health personnel. We are aware that this could impact the qual-
ity of our data. This survey included de-identified data on demo-
graphics, previous diagnostic testing, patient knowledge of
epilepsy etiology, AEDs prescribed, doses, treatment adherence,
and CAM use.

2.1. Questionnaire development 2.2. Outpatient clinic patients with epilepsy

The ethical standards of the original pilot questionnaire were
approved by the Director of the Neurology Training Program at
the primary tertiary-care teaching hospital (Hospital Escuela) of
the National Autonomous University of Honduras (UNAH). The
questionnaire was in Spanish and based on epilepsy treatment
practices and adherence reported at the Hospital Escuela (UNAH)
Outpatient Neurology Clinic in 2000 and 2001 [9]. Following this
pilot study, minor clarifications and/or revisions were made and
the questionnaire was reapproved for use. At the time of this ap-
proval, a university-wide institutional review board had not been
fully established, and ethical approvals were done alternatively
by departments of the university or the directors of the hospitals
or clinics participating in the research project. For this study, in
addition to the Neurology Director’s approval, local directors of
A single survey was distributed to 274 patients diagnosed with
epilepsy or their caretaker(s) at outpatient medical clinics where
primarily general practitioners gave epilepsy care. Epilepsy diag-
nosis in patients interviewed was ascertained according to Interna-
tional League Against Epilepsy (ILAE) criteria. Surveys were
distributed from March 2001 through December 2002.
2.3. Questionnaire format and interview for Miskito tribesmen without
epilepsy
Using the same epilepsy survey questionnaire (Fig. 1), and an
interview format developed previously as part of a preliminary
anthropological study on epilepsy carried out in other communi-
ties throughout Honduras [9,10], we translated the approved ques-

NATIONAL AUTONOMOUS UNIVERSITY OF HONDURAS, NEUROLOGY POST- 22. Have you ever stopped taking your drugs without medical orders? Yes No
GRADUATE PROGRAM, GREENWOOD GENETIC CENTER, AND THE EPILEPSY If the answer is yes, why did you stop taking your drugs ? (circle)
FOUNDATION (USA) a) You had no money to pay for it.
b) You did not know where you could find it to buy.
Name: Record No.: c) You did not want to buy it.
d) You couldn’t find a place where you could buy it.
1. Date: _______________________ Investigator initials:___________________ e) You thought it did not work.
2. Sex: Male Female Place of investigation:__________________ f) You feared you could have an allergic reaction to the drug(s).
3. Age: g) You did not have transportation to go and get it.
4. City: h) You did not have the time to go and get it.
5. Domicile classification (circle) i) There wasn’t any at the health center.
a) urban b) rural c) suburban d) tribe j) There wasn’t any at the hospital.
6. Do you have someone in your family with seizures or epilepsy? 23. How do you pay for your drugs?
a) yes _____________ (relationship) b) no a) your money b) borrow money c) you don’t pay, state gives it to you
7. Have you ever had trembling in your arms or legs? Yes No d) health insurance e) other _____________
8. Have you had seizure events where you fall down and become pale? Yes No 24. Have you ever used other treatments for your seizures? Yes No
9. Have you ever lost your consciousness? Yes No If the answer is yes, circle the letter that applies:
10. Have you had seizures where you fall down and bite your tongue? Yes No a) Herbs, name _______________ (If it’s possible to get a sample,
11. Have you had momentary seizures in your arms, legs, or either side put it between 2 paper pages, and press them with a book)
of the face? Yes No b) Potions prepared by a medicine man
12. Have you had episodes where you stay absent/out of touch? Yes No c) Amulets
13. Have you had seizures where you smell strange odors? Yes No d) Bath done by a medicine man
14. How old were you at your first seizure? _______________________ e) Acupuncture
15. How old were you at your last seizure? _______________________ f) Massages
16. Do you know the cause of your seizures? Yes No g) Pray to Saints
Reason ___________________ h) Pray to spirits
17. Have you ever had seizures with fever before 5 years of age? Yes No i) Pray to God
18. Have you ever taken drugs for seizure treatment? Yes No j) Special diet: describe it _______________________________
19. Are you taking drugs for seizures now? Yes No k) Others ________________________________________
Name ____________________ Dose __________________ 25. Are you using any of these above treatments now? Yes No
Name ____________________ Dose __________________ 26. Have you ever had any of these exams done to you? (circle) Yes No
Name ____________________ Dose __________________ a) EEG b) cranium X ray c) CT scan d) MRI e) others f) none
20. Are you always able to get your seizure drugs? Yes No 27. Have you ever had 2 or more continuous seizures or many continuous
21. Where do you usually obtain your drugs? (circle) seizures without stopping? Yes No
a) health ctr b) local drug store c) hosp d) private clinic e) other _____ 28. Had you stopped taking your drugs for seizures just before you had
those seizures? Yes No

Fig. 1. Pilot epilepsy survey questionnaire used (translated from Spanish into English) to interview patients from the Honduran outpatient epilepsy clinic at Hospital Escuela.
Questionnaire then used in a nationwide survey of people with epilepsy seen in private and public clinics in 12 of 18 departments in Honduras. Developed by the National
Autonomous University of Honduras Neurology Postgraduate Program, Greenwood Genetic Center, and the Epilepsy Foundation (USA).
 Author's personal copy

R.M. Durón et al. / Epilepsy & Behavior 14 (2009) 645–650 647

tionnaire into Miskito making only minor grammatical revisions.
Translation and this part of the study were performed with the
help of primary schoolteachers in the two Miskito communities
surveyed and one anthropologist who had been born into a Miskito
tribe. Verbal consent was obtained prior to every interview. The
participating individuals did not have epilepsy and were selected
randomly in public clinics and by home visits in the Miskito com-
munities. In cases where the educational level of a respondent was
high, answers were provided in writing rather than being noted by
the interviewer. When appropriate, multiple responses to ques-
tions were allowed.
The interviews were conducted among Miskito tribespeople
within the Ilaya and Tikirraya counties of Gracias a Dios Depart-
ment. This is in the least populated and most isolated department
in Honduras. These people work primarily in agriculture and fish-
ing, with and without diving. Their basic diet consists of a variety
of roots, bananas, rice, beans, seafood, birds, pork, corn, and sugar.
2.4. Survey team
3.1.3. Treatment adherence and CAM use
Two-hundred fifty-seven patients (93.7%) were reportedly tak-
ing drugs for their seizures when they were interviewed, but 121
(44.2%) reported they had stopped treatment in the past (Table
2). Fifty-eight patients/caretakers (48%) reported nonadherence
because of AED unavailability and 20 patients/caretakers (16.5%)
cited AEDs as being unaffordable (Table 3). The types of AEDs pa-
tients with epilepsy were prescribed by their clinic doctor are
listed in Table 4. Phenytoin and phenobarbital were used as mono-
therapy by 52 (20.2%) and 37 (14.4%) patients, respectively, and
118 (46%) patients were using polytherapy. The state paid for some
or all treatment for 167 (60.9%) patients. One-hundred forty-one
(51.5%) patients had used alternative treatments (Table 2), and
86 (31.4%) were using a variety of alternative treatments, and com-
monly more than one at a time, at the time the survey was admin-
istered (Table 5). The most popular alternative treatments were
praying (n = 107, 75.8%), taking herbs (n = 58, 41.1%), and/or using
potions (n = 41, 29.1%) (Table 5).

Those administering the surveys had been previously trained in

administering epilepsy surveys by the senior researchers (R.M.D., Table 2
M.T.M., K.R.H.). They were involved in the follow-up of patients Adherence history elicited from surveyed outpatients with epilepsy.
with epilepsy in 3 private and 10 public clinics throughout Hondu-
No. %
ras during the period of this study. Most of the practitioners had
Currently takes medicine 256 93.4
participated in the original epilepsy pilot study and were practic-
Stopped medicine in the past 121 44.2
ing as general practitioners between March 2001 and December Gets the medicine all the time 223 81.4
2002. Uses CAMa sometime 141 51.5
Uses CAM currently 86 31.4

3. Results a
Complementary and alternative medicine.

3.1. Patients from outpatient clinics

3.1.1. Demographics of outpatient clinic patients with epilepsy Table 3

The 274 epilepsy patients in the cohort included 114 (41.6%) Reasons for nonadherence given by surveyed outpatients with epilepsy.
males and 160 (58.4%) females. They represented 12 of the 18 Hon-
No. %
duran departments. The average age was 30 years (range: 7 to
Drug not available at hospital 25 20.7
79 years).
Drug not available at health center 25 20.7
No money to pay for drug 20 16.5
3.1.2. Seizure history Thought drug did not work 16 13.2
The mean age at epilepsy onset was 15.8 years. The mean age at Forgot to take drug 16 13.2
Did not want to buy drug 15 12.4
last seizure was 28.4 years, and the average number of years hav-
Feared reaction to drug 14 11.6
ing seizures was 12.5 (range: 0.7–61 years). Of the 217 patients Did not want to take drug 10 8.3
whose seizures could be classified, 192 (88.4%) had partial seizures No transportation to get drug 9 7.4
with secondary generalization, 24 (11.1%) had only generalized sei- No symptoms 8 6.6
zures, and one (0.5%) had partial seizures only. Thirty-seven (17%) Could not find a place selling drug 8 6.6
No time to get drug 7 5.8
of the 217 patients had a history of febrile seizures. The patients
‘‘Other”a 4 3.4
listed different etiologies for their epilepsy, and these data are
a
summarized in Table 1. Seventy-nine outpatients (36.4%) said they No prescription, drug expired.
knew the cause of their seizures. Of those reporting causes, the
most common were neurocysticercosis (n = 28, 35.4%) and head
Table 4
trauma (n = 20, 25.3%). Seventy-six patients (35.4%) reported a
Antiepileptic drugs used by surveyed outpatients with epilepsy.
family history of seizures.
No. %
Monotherapy (n = 139)
Table 1 Phenytoin 52 20.2
Etiologies suggested by surveyed outpatients with epilepsy. Carbamazepine 39 15.2
Phenobarbital 37 14.4
Etiology No. % Valproic acid 11 4.3
Neurocysticercosis 28 35.4 Polytherapy (n = 118)
Head trauma 20 25.3 Phenytoin, phenobarbital 65 25.3
Fever 9 11.4 Carbamazepine, phenobarbital 16 6.2
Brain lesion 6 7.6 Phenytoin, carbamazepine 7 2.7
Birth trauma 5 6.3 Phenytoin, carbamazepine, phenobarbital 6 2.3
‘‘Other”a 11 13.9 Phenobarbital, valproic acid 5 1.9
a Carbamazepine, valproic acid 4 1.6
Stroke, meningitis, genetics, viral encephalitis, moon change, menses, high
‘‘Other” combinations 15 5.9
blood sugar, alcoholism.
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648 R.M. Durón et al. / Epilepsy & Behavior 14 (2009) 645–650

Table 5 Table 7
Complementary and alternative medicines used by surveyed outpatients with Epilepsy etiologies suggested by Miskito tribesmen without epilepsy.
epilepsy.
Etiology No. %
No. %
Bad spirits 12 24
Herbs 58 41.1 Weakness or disease of the blood 6 12
Potions 41 29.1 Lack of sexual activity 5 10
Amulets 2 1.4 Worries 5 10
Medicine man bath 8 5.7 High or low blood pressure 5 10
Massage 5 3.5 Being unclean 4 8
Pray to saints 16 11.3 Heredity 3 6
Pray to spirits 11 7.8 Witchcraft 3 6
Pray to God 80 56.7 Weakness 3 6
Special diet 8 5.7 To be sick 3 6
Other 9 6.4 Any contact with dead bodies 2 4
Use of drugs 2 4
Intestinal parasites 2 4
Incomplete nutrition or food intake 2 4
3.2. Miskito tribesmen without epilepsy ‘‘Other”a 14 28
a
Headache, menses, sun exposure, brain parasite, brain weakness, temperature
3.2.1. Demographics changes, alcoholism, sexual activity during menses, malaria, nervousness, head
We interviewed 49 members of the Miskito tribe, 26 males and trauma, psychosocial problems.
23 females, who did not have epilepsy. Participating individuals
were selected randomly from a public health clinic and by home
visits. The 29 people (59%) from Tikirraya and the 20 (41%) from medicines mentioned were aspirin and vitamins. Herbs mentioned
Ilaya represented 2.2% of the total estimated population of Gracias by those interviewed were cotton leaves, tayuyo, araspata (‘‘king
a Dios Department. The average age of the participants was aula” or ‘‘sleepy plant”), kuma sirpi (small, hot pepper), mina pauni
34 years (range: 14–70). Forty-two (86%) were literate. Of those (‘‘the plant of the reddish small feet”), and yutawa (herb of the
reporting occupations, 21 (46%) were housewives, 10 (22%) were ‘‘yellow flowers of noon”). Samples were not collected for taxo-
farmers, 5 (11%) were religious ministers, 3 (7%) were schoolteach- nomic classification. Miskito tribespeople suggested some treat-
ers, 2 (4%) were students, 2 (4%) were nurses, and 3 (7%) had other ments and precautions; among other things (Table 8), they
occupations. would prohibit patients from eating the meat of birds or pigs or
seafood (n = 15, 31%); from riding alone in a canoe (n = 7, 14%);
3.2.2. Beliefs about the etiology of epilepsy from being alone (n = 10, 20%); or from seeing or touching cadavers
When asked about the word for epilepsy in the Miskito lan- (n = 6, 12%). Only three (6%) Miskito tribespeople could name some
guage, 11 (22%) said it was lasa prukisa, or ‘‘a hit from a demon.” examination used in the diagnosis of epilepsy: two mentioned X-
Another 6 (12%) used the term bla alkisa, or ‘‘disease that causes rays and one mentioned blood tests.
permanent convulsions.” The person having ‘‘permanent convul- If Miskito tribespeople had to give first aid to a patient, 22 (44%)
sions” is called blakira. Eighteen different terms were used to de- would spray water over the patient, 20 (40%) would give him some
scribe epileptic seizures or epilepsy (Table 6). Seventeen (34.7%) Miskito medicine (primarily herbal teas and massages), 11 (22%)
patients provided names for epilepsy implying that the disorder would take the patient for medical attention, 10 (20%) would make
is related to the actions of or attacks by bad spirits or demons. the patient smell an aromatic substance (usually locally available
The members of the Miskito tribe provided multiple ideas about oils for massages), 4 (10%) would tie or hold the patient down,
the etiology of epilepsy (Table 7). There is no one specific word that and 4 (10%) would lock the patient inside their room or house.
can be translated as epilepsy from Miskito into Spanish/English.
3.2.4. Attitudes toward epilepsy
3.2.3. Ideas about epilepsy treatment When Miskito tribespeople were asked about their feelings on
The Miskito tribespeople said that the first person they would seeing someone have an epileptic seizure, 37 (76%) said they felt
consult for epilepsy was a traditional healer, or sukia. Fifteen fear. The others said they felt nervous or had compassion and pity
(30%) Miskito tribespeople said they knew about epilepsy treat- for the patient. In addition, some indicated they would be alert to
ment options such as a Miskito medicine made of herbs available
in the community. Only 3 (6%) said they knew about specific AEDs
(phenobarbital and phenytoin) used to control seizures. Other Table 8
Actions Miskito tribesmen without epilepsy suggest patients with epilepsy should not
perform.

No. %
Table 6
Everyday terms for epilepsy used by Miskito tribesmen without epilepsy. Diet restrictions, especially meatsa 15 31
Be alone 10 20
Miskito name English translation No. %
Ride a canoe alone 7 14
Lasa prukisa Hit of a demon that makes the person fall convulsing 11 22 See or touch dead bodies 6 12
Blakira A persons that has convulsions 10 20 Use knifes or sharp utensils 6 12
Bla alkisa Permanent convulsions 6 12 Perform work at home 4 8
Pish prukisa Convulsion 3 6 To see persons working to make coffins 3 6
Yumu kira Disease produced by the spirits 3 6 Plant in the fields 3 6
Lash kira Person possessed by demons 2 4 Get close to rivers or to wash clothes in the river 3 6
Bla dowkisa To be dizzy or drunklike 2 4 Engage in sexual activity during menses 3 6
Wina tatahbisa Tremors in the body 2 4 ‘‘Other”b 18 36
‘‘Other”a 10 20 a
Meats: fish, chicken, hen, pork, duck, turtle.
a b
Attacks (bla sikniska alkisa), dizziness (bla sikniska), mad/confused (mumuhkira), Physical exertion, scare the patient, be a teacher, eat some fruits, drink alcohol,
fall caused by a spirit (pruki batakan), paralyzed (sip wapras), convulsing (bla alkan, smoke, sleep deprive, travel too much, get angry, think too much, sun exposure,
pishkira, bla prukisa, pishpraprukira). enter the sea, ride a horse, go to high places, be close to a gas stove.
 Author's personal copy
R.M. Durón et al. / Epilepsy & Behavior 14 (2009) 645–650
help the patient stay away from harm (n = 9, 18%). Thirty-nine
(80%) thought that the prognosis of persons with epilepsy was
death from the disease or the epileptic seizure and that those near
a river were at the highest risk of dying (n = 7, 14%). Other out-
comes mentioned were becoming ‘‘insane” (n = 9, 18%), getting lost
on the way to work or home (n = 3, 6%), and becoming ‘‘handi-
capped” (n = 2, 4%).
4. Discussion
Nationwide data from interviews with Honduran patients with
epilepsy and Honduran Miskito tribespeople without epilepsy
demonstrate the contrasts and similarities with respect to epilepsy
concepts in Honduras. Considering the marked diversity of ethnic/
cultural values in the Honduran population interviewed for this
study, many ideas about etiology and treatment were similar and
represent opportunities to improve epilepsy care in Honduras.
Of Honduran outpatient epilepsy clinic patients responding to
the survey, 44% admitted to having been nonadherent at least once
to prescribed AEDs (Table 2). Compensating for underreporting,
this rate is similar to the 45–67% nonadherence rate noted in stud-
ies with similar methodology [4,5,11]. This high rate of nonadher-
ence in Honduras is impacting both the patients’ health and the
economy of this low-resource nation. Greater seizure frequency,
increased morbidity, increased treatment seeking, and less work-
place productivity are all related to patient nonadherence [2,3].
The most often cited reasons for nonadherence were that the
medication was not available when the patients visited the hospi-
tal or health clinic (n = 50, 41.4%) and that the patients could not
find a location selling the drug (n = 8, 6.6%). This has also been re-
ported in other studies on the epilepsy treatment gap in develop-
ing nations [11]. Poor people from low-resource countries find
AEDs, such as phenobarbital and phenytoin, to be expensive even
though they are two of the most affordable drugs in high- and
low-resource countries. The fact that phenobarbital and phenytoin
are the two most affordable AEDs could present a problem for low-
resource countries attempting to obtain medicines to treat patients
with epilepsy. Pharmaceutical companies may find that producing
these two drugs for low-resource countries is not profitable be-
cause of the limited commercial viability of selling these drugs
[11,12].
Twenty (16.5%) of the patients with epilepsy surveyed reported
financial difficulties as the reason for being unable to afford the
drug. In 2003, the ILAE estimated that 80% of the population in La-
tin America would be provided with social security for health care
[11]. There is a disparity between that estimate and the reported
60.9% of patients having their AEDs dispensed at public clinics
and paid for by the Honduran government. However, it must be
considered that the report includes countries wealthier than Hon-
duras, such as Brazil [12]. Furthermore, 60.9% seems higher than
expected when compared with another study that states that ‘‘in
a developing country like Honduras, there is limited government-
sponsored health care” [9]. It can be assumed that the government
coverage of medication is probably an average of these two studies,
and our findings support that conclusion (Table 3).
Cultural beliefs compound the problem of nonadherence
[6,9,10,12,13]. The results of our surveys illustrate that the Hondu-
ran Miskito population without epilepsy believe that spirituality
and the supernatural play an important role in the etiology of epi-
lepsy, which is considered to be caused ‘‘by the hit of a demon”
(Table 6). Believing that spirit possession is the cause of epilepsy
makes patients inclined to prefer traditional medicines, and they
rarely consider antiepileptic drugs the first treatment of choice.
Also outside of Honduras, a significant proportion of people with
epilepsy use CAM [6–8]. Studies from varied cultural groups show
649
that prayer/spirituality, herbs, vitamins, and stress management
are the most commonly used forms of CAM and their use appears
to be independently related to gender, economic status, and a be-
lief in the safety of CAM use [6–9,14–19].
Acute first aid for seizures commonly includes the use of water,
massages, and odiferous compounds to revive the patient, accord-
ing to Honduran Miskito tribespeople without epilepsy. This has
also been reported in several studies in other regions of Honduras
and in other countries [6,7,10,13]. These same beliefs and practices
have been observed in other low-resource countries and have led
to the creation of the folk dichotomy theory [6–8]. This theory sug-
gests that cultures that believe in diseases caused by the supernat-
ural cannot be treated with modern medicine, and traditional
medicine should be used to treat patients with ‘‘supernatural” ail-
ments [7,8,13]. Of the Miskito tribespeople without epilepsy inter-
viewed, 30% knew of treatment options for patients, and the
majority of these were herbal remedies and ‘‘Miskito medicine.”
Only 6% knew of the AEDs phenobarbital and phenytoin. The inter-
views indicated that longstanding rural populations probably re-
main highly nonadherent most of the time secondary to their
deeply rooted traditional cultural beliefs. In addition, the beliefs
of these populations have probably impacted the beliefs and cul-
ture of many Hondurans, as indicated by the fact that 52% of the
outpatient epilepsy clinic patients surveyed used CAMs, many of
which involved similar ingredients or techniques. However, it is
also likely this large percentage of CAM use is related to the
unavailability of modern medicine and comprehensive epilepsy
care in low-resource countries, which prompts both patients and
communities to look for options in traditional medicine. Neverthe-
less, following recurrent seizure events or status epilepticus, pa-
tients may be brought short or long distances to a government
community outpatient health clinic for treatment of complications
from the epilepsy including bronchial aspiration, asphyxiation,
burns, and fractures.
Cultural beliefs also impact how people behave toward people
with epilepsy; in both high- and low-resource countries, people
with epilepsy are still burdened by stigma [14–16]. As documented
in the interviews with Miskito tribespeople without epilepsy, one
of the most conclusive findings of anthropological studies on epi-
lepsy in different parts of the world has been that people with epi-
lepsy are commonly believed to be unable to be normally
employed or be independent in everyday tasks. Social problems
stemming from epilepsy are also well documented [17–19]. Beliefs
remain strong that only traditional healers are capable of divining
causes and treating the condition. Relatives and family members
commonly accept seizure disorders as a misfortune, and this leads
to nonacceptance of and nonadherence to modern medical treat-
ment [20]. These cultural beliefs not only increase the problem of
nonadherence, but they also cause the patients more unnecessary
hardships while trying to cope with this chronic disease.
As reported by an ILAE/IBE/WHO Global Campaign Against Epi-
lepsy survey, our findings confirm that epilepsy care is still inade-
quate in low-income countries like Honduras [21–23]. Widespread
nonadherence is directly related to a poor economy, unavailability
of medication, cultural beliefs that stigmatize those with epilepsy,
and the use of CAMs rather than AEDs [21–23]. A comprehensive
epilepsy education program appears to be the first priority to
evoke change [24,25], but this also needs to be accompanied by
industry–governmental cooperation to access, procure, store, and
distribute AEDs effectively as has been already demonstrated in
low-resource countries [26–28]. It is imperative that we teach
about the common etiologies of epilepsies and that AEDs are an
effective way of treating epilepsy. We need to include in the teach-
ing that many of the views about epilepsy and about safety mea-
sures and risks (including river drowning) for people with
epilepsy are very similar to those in high-resource countries. This
 Author's personal copy
650 R.M. Durón et al. / Epilepsy & Behavior 14 (2009) 645–650
can aid in education efforts because many of the educational pro-
grams used in high-resources countries can be used with relatively
few cultural changes in a country like Honduras. Efforts to elimi-
nate stigmatization of people with epilepsy so they may have a
greater chance of receiving proper treatment would also help close
the treatment gap, which is rampant in this and other low-re-
sources nation. These efforts must also promote their opportunities
to pursue a relatively normal lifestyle. In addition, an intensive
investigation into the effects of the CAMs used by Hondurans
would provide insight into whether or not the treatments being
used are beneficial or if their overall effect is detrimental to the pa-
tient. If those who offer comprehensive epilepsy care do not under-
stand and consider community and individual beliefs that
perpetuate harmful or inadequate epilepsy treatments, the long-
standing stigma associated with epilepsy and the existing treat-
ment gap will not be overcome.
Conflict of interest statement
There are no conflicts of interest or other financial disclosures to
report with respect to this article.
Acknowledgments
We thank the Greenwood Genetic Center for its support of the
completion of this project and Patti Broome for her assistance with
the project. We also thank Shirley Tovar, Tania Fernandez, Francis
Barahona, Lenín Banegas, Lizandro Martínez, Juan R. Osorio, Dora
Arévalo, and Jorge Nazar for their help during field interviews. This
work was done in the Ilaya and Tikirraya counties of Gracias a Dios
Department, Honduras; Tegucigalpa, Honduras; Greenwood, SC,
USA; and Charleston, SC, USA. Dr. K.R. Holden was supported in
part by the Fritz E. Dreifuss International Travel Award through
the Epilepsy Foundation, USA (2001).
References
[1] Collings JA. International differences in psychosocial well-being: a
comparative study of adults with epilepsy in three countries. Seizure
1994;3:183–90.
[2] Hovinga CA, Asato MR, Manjunath R, et al. Association of non-adherence to
antiepileptic drugs and seizures, quality of life, and productivity: survey of
patients with epilepsy and physicians. Epilepsy Behav 2008;13:316–22.
[3] Faught E, Duh MS, Weiner JR, Guérin A, Cunnington MC. Nonadherence to
antiepileptic drugs and increased mortality: findings from the RANSOM Study.
Neurology 2008;71:1572–5178.
[4] Davis K, Candrilli S, Edin H. Prevalence and cost of nonadherence with
antiepileptic drugs in an adult managed care population. Epilepsia
2008;49:446–54.
[5] Enríquez-Cáceres M, Soto-Santillana M. Incumplimiento farmacológico en
pacientes con epilepsia. Rev Neurol 2006;42:647–54.
[6] Danesi MA, Abetunji JB. Use of alternative medicine by patients with epilepsy:
a survey of 265 patients with epilepsy in a developing country. Epilepsia
1994;35:344–51.
[7] Liow K, Ablah E, Nguyen JC, et al. Pattern and frequency of use of
complementary and alternative medicine among patients with epilepsy in
the midwestern United States. Epilepsy Behav 2007;10:576–82.
[8] Kim IJ, Kang JK, Lee SA. Factors contributing to the use of complementary and
alternative medicine by people with epilepsy. Epilepsy Behav 2006;8:620–4.
[9] Durón R, Medina MT, Holden KR, et al. Study on antiepileptic treatment
compliance by patients from Hospital Escuela. Rev Med Hond 2001;69:140–6.
[10] Durón R, Medina MT, Boyd D, Stansbury J. Anthropology of epilepsies. In:
Medina MT, Chávez F, Chinchilla N, Gracia F, editors. Epilepsies in Central
America. Tegucigalpa: Scancolor; 2001. p. 229–35.
[11] Meinardi H, Scott RA, Reiss R, Sander JW. ILAE Commission report: The
treatment gap in epilepsy: the current situation and ways forward. Epilepsia
2001;42:136–49.
[12] Murthy JMK. Medical management of epilepsy: some problems and pitfalls in
developing countries. Epilepsia 2003;44(Suppl. 1):38–42.
[13] Pal SK, Sharma K, Prabhakar S, Pathak A. Psychosocial, demographic, and
treatment-seeking strategic behavior, including faith healing practices, among
patients with epilepsy in northwest India. Epilepsy Behav 2008;13:323–32.
[14] Lai CW, Huang XS, Lai YH, Zhang ZO, Liu GJ, Yang MZ. Survey of public
awareness, understanding, and attitude toward epilepsy in Henan Province,
China. Epilepsia 1990;31:182–7.
[15] Rwiza HT, Matuja WB, Kilonzo GP, et al. Knowledge, attitude and practice
toward epilepsy among rural Tanzania residents. Epilepsia 1993;34:1017–23.
[16] Radhakrishnan K, Pandian JD, Santhoshkumar T, et al. Prevalence, knowledge,
attitude, and practice of epilepsy in Kerala, South India. Epilepsia
2000;41:1027–35.
[17] Jilek-Aall L, Jilek M, Kaaya J, Mkombachepa L, Hillary K. Psychosocial study of
epilepsy in Africa. Soc Sci Med 1997;45:783–95.
[18] Reynolds S. Constructing epilepsy: images and contexts in East Africa. In:
Ingstad B, Reynolds S, editors. Disability and culture. Berkeley: Univ. of
California Press; 1995. p. 226–44.
[19] Virmani V, Kaul V, Juneja S. Sociocultural and economic implications of
epilepsy in India. In: Penry JK, editor. Epilepsy: the eighth international
symposium. New York: Raven Press; 1977. p. 385–92.
[20] Fandino-Franky J, Silfvenius H. World-wide disparities in epilepsy care: a Latin
American outlook. Epilepsia 1999;40(Suppl. 8):48–54.
[21] Dua T, de Boer HM, Prilipko LL, Saxena S. Epilepsy care in the world: results of
an ILAE/IBE/WHO Global Campaign Against Epilepsy survey. Epilepsia
2006;47:1225–31.
[22] Fernandes PT, Noronha AL, Sander JW, Li LM. Stigma scale of epilepsy: the
perception of epilepsy stigma in different cities in Brazil. Arq Neuropsiquiatr
2008;66(3A):471–6.
[23] Carod-Artal FJ, Vázquez-Cabrera CB. An anthropological study about epilepsy
in native tribes from Central and South America. Epilepsia 2007;48:886–93.
[24] Minshall I, Smith D. The impact of a citywide audit with educational
intervention on the care of patients with epilepsy. Seizure 2008;17:261–8.
[25] Paschal AM, Hawley SR, Romain T, et al. Epilepsy patients’ perceptions about
stigma, education, and awareness: preliminary responses based on a
community participatory approach. Epilepsy Behav 2007;11:329–37.
[26] Bergen DC. For the World Federation of Neurology Research Group on
Organization and Delivery of Neurological Services, USA. Special report from
the World Federation of Neurology: The worldwide impact of new drugs:
development, distribution, and use. Epilepsia 1997;38:1050–3.
[27] Mamo Y, Seid E, Adams S, Gardiner A, Parry E. A primary healthcare approach
to the management of chronic disease in Ethiopia: an example for other
countries. Clin Med 2007;7:228–31.
[28] Placencia M, Sander JW, Shorvon SD, et al. Community Management of
Epilepsy Project, Quito, Ecuador. Antiepileptic drug treatment in a community
health care setting in northern Ecuador: a prospective 12-month assessment.
Epilepsy Res 1993;14:237–44.