Explanatory models of epilepsy: key deterrents to seeking biomedical care and effective epilepsy management in Uganda

Abstract

Background:

The Sub-Saharan region has one of the largest populations with misconceptions about the etiology, manifestation, and management of epilepsy. Consequently, the majority of people living with epilepsy (PWE) receive unorthodox interventions that contribute to persistent uncontrolled seizures and poor quality of life. This study aimed to explore the prevailing explanatory models of epilepsy and their role in determining health-seeking behavior.

Methods:

We utilized a qualitative, phenomenological design, with a sample of 128 participants, comprising of 19 Adolescents with Epilepsy (AWE) and 109 key-informants, including caregivers, healthcare workers, teachers, traditional and faith healers, and community leaders.

Results:

Both PWE and community members held various beliefs about epilepsy, with a predominant pluralistic explanatory model characterized by a combination of biological, social, and supernatural assumptions. There was a high preference for supernatural remedies from traditional and/or faith healers, which seemed to be a major barrier to the uptake and adherence to biomedical care.

Conclusion:

The prevailing explanatory models might account for the observation that the PWE, including those on anti-seizure medication, often engage in non-allopathic care that can impact reaching or maintaining biomedical treatment. Effective epilepsy management requires a multi-pronged approach involving the utilization of contextually tailored epilepsy literacy programs and collaboration with traditional and faith healers to facilitate linkage to biomedical care.

Graphical Abstract

1. Introduction

Epilepsy is the most common neurological disorder in Sub-Saharan Africa, and 80% of the world’s epilepsy cases occurring in low and middle income countries [1-4]. Despite having the highest epilepsy prevalence, a significant proportion of the population has very limited understanding of its causes and mechanisms [5,6]. Consequently, there are numerous explanatory models, with most individuals holding multiple simultaneous beliefs about the causes of epilepsy [6,7]. In most parts of Africa, the beliefs about the causes of epilepsy mainly revolve around supernatural or sociocultural factors such as witchcraft, ancestral spirits, evil spirits, and divine punishment [8-11], with a tendency for some people to integrate biological explanations. Whereas some people acknowledge biological etiologies such as traumatic brain injuries, genetics, and infections, many attribute the causative factors of epilepsy to cultural phenomena such as witchcraft and ancestral spirits [12]. Interestingly, the belief that epilepsy is due to evil spirits, witchcraft, and ancestral spirits exists even among educated individuals, including health professionals [12,13].

Cultural beliefs about epilepsy are a major barrier to the recognition and acceptance of epilepsy as a biomedical condition [4,14-16], which may in part explain the finding that the majority (60–80%) of epilepsy patients remain untreated [2,17]. In a study conducted in Ethiopia, among religious and traditional healers, the cultural (58%) exceeded biological (42%) causal explanations of epilepsy, and correspondingly, 77% of the participants recommended cultural treatment [8]. A study conducted in Mali revealed that 63% of families with epilepsy visited traditional healers as the primary health care providers, and the traditional healers were the main source of epilepsy-related information for 22% to 27% of the population [13]. The finding that traditional healers are the main source of epilepsy-related information is worrisome, since they tend to have diverse beliefs and misconceptions about the causes of epilepsy and hence the provision of inappropriate care. For instance, a recent study found that they attributed seizures to ancestral spirits’ calling or desire for appeasement, snakes in the stomach, impurities in the digestive system, and witchcraft, and the treatment options included herbal medicine, insects, urine of persons with epilepsy (PWE), and saliva or foam released during a seizure [18]. Traditional treatment practices greatly differ depending on the cultural context, which determines the explanatory model or the cause of the seizures, as well as the orientation of the traditional healer. However, traditional healers share a common belief in supernatural causation of epilepsy and treatments often include herbal remedies and spiritualistic rituals. Often, when patients acknowledge potential biological causes it remains intertwined with traditional beliefs. When both traditional and biomedical solutions are pursued, conflicts in causal beliefs or treatment approaches may result in non-adherence. Thus, even among the patients who embrace the biomedical explanatory model of epilepsy, concurrent pluralistic beliefs about supernatural causation can lead to inadequate management of epilepsy.

Currently, there is limited information about how the different explanatory models shape health-seeking behavior and epilepsy management practices. While our previous work demonstrated that high beliefs in supernatural or spiritual causation and lower family income were associated with seeking non-allopathic care [6,19], we endeavored to deepen our understanding of how causal models impact care seeking to inform the development of culturally sensitive and informed interventions. Thus, this study aimed to explore the prevailing explanatory models of epilepsy amongst PWE patients and key community members and the role of these models in determining health-seeking behavior and choice of epilepsy management procedures.

2. Methods

2.1. Study context and ethical statement

This study is part of a large AWE Change research project [NIH R01HD106277] which was approved by the TASO Research and Ethics Committee (TASO-2022-102), the Uganda National Council of Science and Technology (Ref: HS2421ES), and Duke Health Institutional Review Board (Pro00110377).

2.2. Study design and participant recruitment

We used a qualitative, phenomenological design to explore the lived experiences of adolescents living with epilepsy (AWE). We recruited a total of 128 participants, including 19 AWE, and 109 key-informants (i. e. 24 caregivers of AWE, 17 teachers, 14 local leaders, 5 traditional healers, 16 faith leaders, and 10 Village Health Team (VHT) members). All participants were purposively recruited from Wakiso District, which encircles Kampala city to the north, west, and south, creating a large suburb with the largest diverse population in the country. The population of Wakiso district has both urban and rural communities whose social demographics are similar to those in the different parts of Uganda. The process of recruiting participants started in January 2023 and ended in July 2024. For inclusion into the study, each participant had to be fluent in either English or Luganda (the local language of the area), which were the languages of communication during the Focus group discussions (FGDs) and Key informant interviews (KIIs).

The participants were primarily identified through the VHT members. The VHTs are community volunteers who receive basic healthcare training [20] to serve as a link between households and the health system [21]. VHTs carryout routine door-to-door home visits for health-related services, including community sensitization and mobilization to engage in health programs, identification and referral of patients to health facilities [22], and sharing of health information [21]. Given their role in provision of health services at household level [22], VHTs are most likely to be aware of actual or probable epilepsy cases in their communities. Key informant categories were purposively selected based on their high likelihood of interacting and providing services to PWE and ability to offer in-depth insights about the prevailing beliefs about epilepsy, its causes, manifestation, community reactions, and treatment.

2.3. Data collection techniques

Data were collected using FGDs and key informant interviews KIIs, which were conducted from Wakiso Health Centre IV, in Wakiso district. The data collection team included four experienced researchers, including MMK, and three researchers from Makerere University School of Public Health hired based on their expertise in qualitative data collection. Except where participants preferred to use English, the FGDs and KIIs were conducted in Luganda. All FGDs and KIIs were tape-recorded and later on transcribed verbatim. Each KII or FGD session lasted for 45–60 min, and each FGD had 4–8 participants. The FGD and KII guides focused on questions about: 1) The lived experiences of PWE, 2) The prevailing beliefs about the causation, manifestation, treatment, and curability of epilepsy; 3) Social reactions to PWE and epileptic seizures; 4) Epilepsy-related stigma, its perpetrators, and effects; the reasons for negative attitudes; and 5) The possible strategies for epilepsy prevention and management.

2.4. Data analysis

The data were analysed using thematic analysis, following Braun and Clarke’s six-step approach [23]. The authors are experienced in qualitative analysis and participated in the process of reviewing the transcripts, extracting data, and in resolving any discrepancies in the emerging codes and themes. The first step of the thematic analysis involved extensive review of the both the FGD and KII transcripts by two co-authors (MMK and MK) to become familiar with the data to be more efficient in the identification of recurrent ideas. The second step involved separate review and coding of transcripts and highlighting the important aspects of the data. In the third step, group related codes were refined. During the fourth step, we reviewed the codes for any similarities among the groups of codes, which resulted in the identification of the overarching ideas and themes; representing the underlying patterns in the data. In the fifth step, the themes were reviewed and refined, including splitting themes with distinct attributes, discarding irrelevant ones, and merging overlapping ones. In the sixth step, we reviewed and categorized the text under the different themes and identified supporting quotes. All the extracted quotes were double-checked for their relevancy to the respective themes by the full research team. The identified themes and the respective quotes were used as a basis for identifying the explanatory models of epilepsy presented in this study.

2.5. Results

As earlier indicated, the study sample comprised of 128 participants, including 19 AWE, and 109 key-informants, representing different categories of key populations in the community. The sociodemographic characteristics of the quantitative sample are indicated in Table 1.

Table 1.

The Sociodemographic Characteristics of the Participants.

Variable		Age Group
		Adolescents	Adults	Total
Gender by Age Group		N (%)	N (%)
	Male	8 (42.10)	38 (34.90)	46 (35.90)
	Female	11 (57.90)	71 (65.10)	82 (64.10)
Age Range (years)		N (%)
AWE	10–19	19 (14.80)
Adults	20–29	7 (5.50)
	30–39	35 (27.30)
	40–49	24 (18.80)
	50 and above	34 (26.60)
	Not disclosed	9 (7.00)
Participant Category
	Caregivers	24 (18.80)
	Teachers	17 (13.30)
	Health Workers	23 (18.00)
	Local Leaders	14 (10.90)
	Religious leaders	16 (12.50)
	Traditional	5 (3.90)
	Healers
	VHT Members	10 (7.80)
Education Level
	University	12 (9.40)
	Diploma	17 (13.30)
	Secondary	32 (25.00)
	Certificate	22 (17.20)
	Primary	34 (26.60)
	No Education	2 (1.60)
	Not disclosed	9 (7.00)

Over half (64.10%) of the participants were female. The AWE were aged between 10 to 19 years, while all the key informants were aged 20 years and above. A small number of participants (22.70%) had tertiary education, and these were mainly teachers and health workers.

2.6. Conceptualization of epilepsy, its causation, and treatment

The data revealed a number of culturally shaped assumptions about the causes of epilepsy, which mainly included biological and spiritual explanatory models that appeared to influence treatment preferences and compliance. All the participants in this study were aware of the condition and referred to it as “ensimbu” (the local term for epilepsy), and each of them had ever seen or had personal experiences with someone with this condition.

We found a multidimensional explanatory framework in which the participants reported multiple causal factors of epilepsy, which broadly included biological, social, and supernatural (spiritual) phenomena. Although in some cases these phenomena were singly used, in most cases they were integrated without clear distinction between the categories of factors. They thus identified four major explanatory models for epilepsy: biological, social, spiritual (supernatural), and pluralistic (multidimensional) (Fig. 1).

Fig. 1.

Causal attributions and the associated epilepsy care-seeking decisions.

Epilepsy was mainly attributed to spiritual, social, and biological factors, but the majority of the participants had pluralistic beliefs that involved combinations of these factors, when explaining the causes of epilepsy. The explanatory models were characterized by a dualistic attributions, including a combination social and spiritual (sociospiritual), biological and spiritual (biospiritual), biological and social (biosocial), and intertwined biological, social, and spiritual explanations. participants had Intertwined with these causal attributions were beliefs related to the efficacy of treatment options and misconceptions about the curability of epilepsy, which contributed to care seeking behavior.

2.7. The biological model

Some of the participants indicated that epilepsy is a brain disorder, which may be caused by genetics, birth trauma, brain infections, or cerebral malaria. The excerpts below indicate that some of the participants were aware of the potential biological causes of epilepsy.

About the cause of the illness, I think it is a brain issue; most likely the brain can get damaged during birth. It could be as a result of an infection; there is also malaria. They say that when one gets cerebral malaria, they get symptoms that can be likened to epilepsy. I might sometimes think that it could be in a certain lineage or even hereditary. There are illnesses that run in families, and I might think that it is one of the causes, also. But all in all, it all revolves around the brain.

[KII, Priest]

However, some had a dualistic view with no clear distinction between the physical brain and mental aspects. This could in part be due to the fact that in the local vocabulary the words “mind” and “brain” are often used interchangeably.

This is a mental disorder that comes seasonally. Most people say it is clan-related; there must be people [in the family] who have ever been epileptic. I know of someone with whom we were at a wedding. The music was up, everyone was enjoying it, and that is when he had a seizure.

[KII, Male Pastor]

It is a mental problem. Something to do with the brain of a person. Some people say the brain is not mature. Someone said that this happens because of genetic issues, because the mother and father of the girl [with epilepsy] were relatives.

[KII, Female Teacher]

2.8. The spiritual (supernatural) model of epilepsy

A frequently mentioned causal explanation for epilepsy was the belief that it is due to ancestral spirits, witchcraft, or demonic possession. Some participants believed that seizures were a means through which ancestral spirits drew the attention of their living descendants to discover demands and/or rituals to be performed. The belief in witchcraft involved both social and spiritual dimensions, attributing epilepsy to evil people purported to have evoked spiritual attacks that cause epilepsy (social) and that seizures are a manifestation of possession (spiritual). These spiritual afflictions were believed to be evoked through witchcraft by evil people, and in some cases the well-being of PWE were presumed to have been spiritually sacrificed or given as offerings to the spiritual world in exchange for wealth or other desires. PWE were thus believed to be the channel through which non-corporeal entities such as spirits, demons, or gods, appear in “human form” at the time of seizure.

They say that when I was still a baby, my father used me for rituals [spiritual sacrifice] because he wanted to get rich. They say that the spirits attack [possess] me during seizures. When you have epilepsy, people say that you were bewitched or used for rituals.

[IDI, Female AWE]

Some people attribute seizures to a particular spirit called “Bulamu,” which has to be appeased for the individual to get relief from the seizures. This spirit is believed to have the ability to transform from good to evil, and when in the evil mode it is referred to as “Kinene” and rituals have to be performed to appease it to reverse the symptoms (seizures).

People think seizures are some sort of possession by a spirit called “Bulamu.” When he brings trouble, he is called “Kinene.” So they attribute that disease to him. He [Kinene] may be demanding some things [appeasement] from the family of the person with epilepsy.

[KII, Female Teacher]

Thus, people with socio-spiritual causal attributions believe that epilepsy can be cured through traditional rituals to appease the spirits or reverse witchcraft spells. This provides a sense of optimism in a possible miraculous recovery, unlike the biomedical perspective that emphasizes seizure control but not full recovery. This may explain why many PWE tend toward believing in supernatural remedies rather than biomedical approaches.

2.9. Lunar or phasic causal attributions

A common supernatural assumption held by many participants was the belief that epilepsy is linked to the lunar cycle and that seizures are particularly expected to manifest during the new moon phase. Interestingly, the belief in the lunar cycle was prevalent even among individuals who believed in the biomedical causes of epilepsy. Many participants believed that during this particular time of the month PWE have to stay home and avoid socialization or crowded places in order to escape shame, potential injuries, and other seizure-associated incidents. This belief in lunar/seasonal manifestation of seizures appeared to influence epilepsy management strategies, with some people believing that PWE should particularly take anti-seizure medication during a specific time of the month. This is illustrated in the excerpts below:

Attacks [seizures] mostly happen when the moon is coming out, but those who know this usually have their drugs ready and are able to take them on time to avoid the attack, and if they take the medication, they take a rest at home. After it's done, they can return to work because it’s not that they don't always get these attacks. They usually know when it happens, and this can help them plan and manage the situation better at home.

[KII, Female Local Leader]

People say that epileptic patients usually get attacks at the beginning of the month when there is a new moon. Due to that belief, epileptic people do not socialize with others or avoid crowded places during that time of the month to avoid getting attacks because when they wake up, they get ashamed.

[KII, Male Religious Leader]

2.10. Stages of curability

Others believed that epilepsy has stages and that it is curable except if it has advanced to critical stages. For example, falling in a fire and getting burnt was believed to be an indication of severe or advanced-stage epilepsy that could no longer be cured. This belief was held across many different community members, including teachers, faith leaders, and community leaders. This is illustrated in the excerpts below:

Epilepsy is curable. But on one condition. The intervention should be before a certain stage, because they say that if the person gets this attack and falls into a fireplace, he cannot be cured, even if you go to heaven.

[KII, Female Teacher]

They say that “ensimbu [epilepsy] has stages, and they can tell that this is a stage where it has extensively advanced, and it is no longer possible to cure it. So they look at the person, the situation, and the reaction of the victim. Then they can tell that this stage is worse [advanced].

[KII, Female Teacher]

“For me, what I have grown up hearing is that epilepsy can be cured, but that can happen if it is treated early enough. People say that if someone gets a seizure and he/she falls in a fire, it will never be cured. But if it has just started before someone falls in a fire, it cures.”

[FGD, Male Local Leader]

I usually do not see them [people] take the person to the hospital because most people say that epilepsy does not heal. They also say that if an epileptic person falls in the fire while cooking, they will never heal. Therefore, epileptic people should not be at fireplaces and wells alone because they say that once they fall into the fire or well, their condition can never heal.

[KII, Male Reverend]

Some also believe that epilepsy is a childhood disorder whose onset cannot occur during adulthood. This belief that seizures cannot have an adulthood onset seemed to increase the likelihood of denial of a diagnosis and making supernatural attributions for individuals whose seizures start manifesting during adulthood.

According to me, I do know that epilepsy does not catch old people. Someone gets it from a young age, or maybe one is born epileptic. But a person does not catch it when he is grown (an adult). [KII, Male Pastor] This disease is not for 20-year-olds [adults]; you cannot get it.

[KII, Female Teacher]

2.11. Social attribution model

It was widely believed that some people have the ability to manipulate or use mystical powers and that they can utilize their inherent or contracted spiritual powers to cause epilepsy and other kinds of misfortune. For example, some believed that people could cause epilepsy through witchcraft, an evil eye, curses, or prayer. Whereas these assumptions seem to highlight some supernatural elements, the primary attribution was social in nature, in that it centered around people’s ability to use their willpower to cause epilepsy. Furthermore, antisocial acts like laughing at someone experiencing a seizure are believed to result in acquiring the condition or the eventual bearing of offspring with epilepsy. Interestingly, when discussing instances where people cause epilepsy, the emphasis is on the person being the focus of causation, rather than on the method of causation, which is witchcraft or spirits. Treatment involves pleading with the perceived perpetrators or socio-spiritual interventions such as offerings and rituals or prayers to reverse the witchcraft or curses.

My epilepsy just started this year. I had just come back from my aunt’s place, and they (family) started saying that my aunt might have bewitched me, yet my aunt did not know anything about it. They then thought that it was the neighbors who bewitched me, and they first took me to a sheik who prayed for me, but after a week, the seizures would return. So, we wondered what the sheik was doing (since the intervention was not working).

[FGD, Female AWE]

Even PWE believed in socio-spiritual causation and that seizures can be prevented through socio-spiritual means, such as appeasement of ancestral spirits and avoidance of certain social situations.

To prevent epilepsy, the person should ensure they are not used for ritualistic [spiritual] sacrifice and that they do not have misunderstandings with their ancestral spirits. If a person does not want to get epileptic attacks, they can appease their ancestral spirits by offering whatever they demand. For example, fruits or food covered with banana leaves, groundnut paste with cow offal, and “bombo” [herb] leaves. Most people I see usually get a basket and put money in it. If you touch that basket, you may get burned [skin depigmentation] or suffer from epilepsy.

[IDI, Female AWE]

2.12. Pluralistic (multidimensional) explanatory model

Whereas some participants conceptualized epilepsy as either a biological or supernatural condition, in most cases people integrated these explanatory frameworks when describing the causation, manifestation, treatment, and prevention of epileptic seizures. For example, participants with a bio-spiritual perspective indicated that epilepsy is a biomedical condition, with spiritual underpinnings stemming from both the biblical scriptures and cultural beliefs. They believed that epilepsy can be a result of biological factors such as genetics, infections, or brain damage, but at the same time suggested that the cure is supernatural or a combination of biomedical and supernatural intervention. In the excerpt below, a participant with a familial predisposition to epilepsy believed that it was a genetic condition or related to brain injury, but also noted spiritual underpinnings and the need for supernatural intervention.

My grandfather gave birth to an epileptic child, and my daughter had epilepsy. This makes me think that this disease is hereditary or genetic. I also hear that if a neonate is held upside down when the brain is still porridge-like, it might bring about epilepsy. People also think that you can get epilepsy if you carry an epileptic person during a seizure. It is also said that when you laugh at someone who gets a seizure, you will catch it, or else your child will. This illness is mentioned in the Bible, and it is one that requires God’s intervention.

[KII, Male Pastor]

Some participants reported that epilepsy is contagious, with this belief having both biomedical and spiritual dimensions. For instance, some participants believed that saliva or foam coming from the mouth during a seizure is infectious and at the same time believed in “spiritual contagion,” where a person can contract epilepsy by skipping over the site where a person has experienced a seizure or laughing at someone who is experiencing a seizure. In such scenarios a person can contract the evil spirit, which induces seizures, and consequently suffer from epilepsy. It was also believed that the individual who spiritually contracts epilepsy may not necessarily experience seizures, but the condition could later on manifest among his or her offspring.

I hear if someone gets an epileptic attack, foam forms, and in case one jumps over it, they contract this illness. People are told not to touch a person experiencing a seizure, not to jump over the site where it has occurred, don't pass there, you'll also contract the sickness.

[KII, Male Pastor]

The belief in “epilepsy contagion” is among the factors that contribute to stigma and failure to offer first aid to PWE.

What people do is to surround the person experiencing a seizure, and they prevent anyone from contacting that person because they think those people are possessed or the curse will be transferred to whoever does so. You're not supposed to touch them or give them any sort of first aid. It is highly discouraged.

[KII, Female Teacher]

As indicated in the excerpt below, even some adolescents with epilepsy (AWE) believed that epilepsy is contagious.

Yes, a person can contract epilepsy. They say that it is contagious. They say, for example, if you touch me while I am convulsing, you can contract it and that is why some people do not come close to me.

[IDI, Male AWE]

Interestingly, the belief in the contagious myth of epilepsy also existed among educated individuals, as illustrated by the following statement by a participant with university level education:

It can be transmitted to another person because the nature of the foam that comes out of the mouth is not the same as typical saliva. It is pure white, and sometimes yellowish, which suggests that it can be contaminated and infectious.

[KII, Religious Leader]

Some participants with pluralistic attributions believed that epilepsy required pluralistic intervention, as illustrated by the following excerpt:

I believe it is due to brain injury or damage, something wrong with the brain. You take her (child with epilepsy) to the hospital, a shrine (traditional healer), and maybe to the church, because the Bible talks about Jesus healing 50 people. However, it needs to be handled at the earliest stages because it comes with different effects if it is not handled at that time.

[KII, Female Teacher]

2.13. Explanatory models as deterrents to biomedical care

The majority of participants attributed epilepsy to bio-socio-spiritual phenomena such as brain injury resulting from infection, witchcraft, ancestral spirits, or divine punishment, and were most likely to seek treatment from religious or traditional healers, or both supernatural and biomedical interventions. PWE often first explore and exhaust supernatural possibilities before seeking biomedical care. This is illustrated in the excerpt below:

Before they come to the hospital facilities [for biomedical care], they first visit traditional healers. When they come, they talk about those funny stories. I went to the traditional healer; I spent a lot of money. I have not seen any difference. So, they first go into such a struggle until they come to the facilities.

[KII, Female Nursing Officer]

Of particular concern was the finding that due to religious and cultural beliefs some PWE had family members with epilepsy but were not aware of or believe in biomedical treatment for the condition. This is illustrated by the following quotes:

For my daughter, we used to go to church and praise the Lord. Epilepsy even exists in the Bible. Jesus even prayed for an epileptic person, and they got healed. That is what we believe in Christianity. We believe that Satan can make one epileptic. There is no way you can erase that from us as born-again Christians. We do pray and believe that God can heal. That is what we believe because when I look at my daughter who died, the more we prayed, the better she even became better without medicine. Just like I have told you, I have grown up to this age, but I have not seen people showing interest in treating this sickness in the hospital. They just put the person somewhere during the seizures until he regains consciousness, and they get used to that after some time.

[KII, Male Pastor]

Interestingly, some would be taken to hospitals to treat the physical injuries acquired during seizures but taken to traditional healers for treatment of epilepsy, which they presume to be a spiritual or supernatural condition.

They usually take these people to the shrine. This girl, I am telling you, the parent took her to a shrine. The wounds were treated in a clinic because they were severe and needed stitches. The parents take them to seek medical advice, and then they take them to the shrine to see how the spirits can help or to see what might be the cause.

[KII, Female Teacher]

2.14. The nature of traditional treatment

The nature of the treatment offered was not specific and differed from patient to patient, depending on the nature of the demands issued by the spirits as manifest either through intuition or dreams.

Epilepsy is treated culturally, and it involves giving that spirit [called Bulamu] whatever it wants. They [traditional healers] ask the spirit to tell them what it demands. So they have to sleep and get the dream [message]. Anyone can get a dream. But mostly they prefer this dream from the real person [PWE]. When they get the spiritual demands, they may, for example, go to Tanda, the site of the Walumbe [spirit of death] or Walusi, or any other mountain where they believe that there is this ‘Bulamu.’ So they take those people there, and they pray [perform rituals]. They ask this ‘Bulamu’ to accept and leave these people [PWE] in peace. So they cook some food, and they prepare some things as they are directed or guided in their dreams. So for them, they seek spiritual guidance. And when they get it, they do what the spirits tell them. Then, fortunately or unfortunately, the person may be healed or may not, whatever.

[KII, Female Teacher]

Those who believed that seizures are a form of demonic possession viewed prayer as the most appropriate intervention. Remarkably, even some of the educated community members believed that epilepsy is a supernatural illness requiring spiritual intervention:

People, especially the community of the born-again, attribute epilepsy to demonic possession. One time, we were called to pray for the person who had epilepsy. I could carry out some exorcisms. So, we had to pray for the poor girl, and the spirit left her. So she came back to life because for them [the born again], they do not just leave the person there. No, we had to carry her to the dormitory, and they called the prayer warriors. So, we came and prayed for the poor girl, and the spirit left her. So, according to that, we believed that it was a possession. So, it is some sort of a spirit.

[KII, Female Teacher]

Individuals with supernatural assumptions about epilepsy believed that epilepsy can be cured through prayers and fasting, and through traditional rituals.

Yes, 100%. I believe that it can be cured. Praying and fasting help because God is the most high healer, and even the medical personnel, when they are treating, say, I have done my part, but now you are in the hands of the Lord to guide you, to give you a second chance.

[KII, Religious Leader]

Traditional interventions often used herbs as a ritual to cast away the witchcraft or evil spirits causing the seizures. While some were instructed to drink herbs, others were instructed to use them externally through bathing or as fumigation smoke. This is exemplified by the following quote of an adolescent girl who had never sought allopathic care but who would bathe in herbs with the hope that epilepsy could be cured:

I have never gone to the hospital. I use herbal medicine. I do not drink it. I bathe using it, and I believe epilepsy can be cured if one uses [herbal] medicine. Besides going to a witch doctor and using the herbs, I do not know of any other effective treatment.

[IDI, Female AWE]

I have not known of any treatment of epilepsy except that of culture and the spiritual, like exorcism

[KII, Female Teacher]

2.15. Epilepsy Incurability as a barrier to biomedical care

The belief that epilepsy is incurable, in part, contributes to the avoidance of seeking biomedical care and the decision to seek traditional remedies, where they expect miraculous healing.

Sometimes they reject our drugs (anti-seizure medications (ASMs)) because they know that they cannot cure the disease and are a waste of time. Of course, they have a belief that this is an incurable disease. And when they go to the witch doctor [traditional healer], they think maybe that they can get a solution from there. They can give something to stop this disease from coming back.

[KII, Female Enrolled Nurse]

This is further compounded by testimonies of miraculous recovery from epilepsy, as illustrated by the excerpt below:

My stepmother also had epilepsy. An old woman from her village gave her medicine to take every day until she became fine. She told me that the old woman later passed on. They say she was given a herbal concoction made with ash, and she has never gotten an attack to date.

[KII, Male Pastor]

3. Discussion

This study aimed to identify the explanatory models for epilepsy and their implications on biomedical treatment-seeking behavior. This stemmed from the observation that the majority of PWE tend to seek supernatural or spiritual intervention, even when they have been initiated on biomedical treatment. Our findings reveal that there are varying assumptions about the causation of epilepsy, which include biological, supernatural, social, and a combination of these factors. Regardless of the underlying assumptions about the causes of epilepsy, we found a high prevalence of misconceptions about the illness, even among teachers and other educated members of the community.

We found that whereas people made specific reference to causal factors, in most cases they made integrated attributions without a clear distinction between the biological, social, and supernatural (spiritual) etiological factors. This was mainly rooted in the pluralistic assumption that there is an interaction between these factors in the causation, manifestation, and treatment of epilepsy. For instance, people believed in the biological actuality of epilepsy, acknowledging that seizures as a brain condition due to brain injury or genetics, but at the same attributed the biological causal factors to underlying supernatural factors such as displeased ancentsral spirits or witchcraft. Consequently, both individuals with biological and supernatural attributions sought supernatural interventions. This is consistent with previous findings that people in Uganda hold concurrent beliefs in supernatural and biological causes of epilepsy, and that they predominantly seek treatment from pastoral and traditional healers [6,19]. Similarly, traditional healing practices are widely embraced in American Indian and Alaska Native communities, and in a recent development, the Indian Health Service (IHS), an agency within the US Department of Health and Human Services, has established a formal model of pluralistic medicine, for direct integration of traditional healers into hospital systems for holistic treatment of patients [24].

Interestingly, in the current study some participants believed that epilepsy can be passed on to the next generation through “bio-spiritual” mechanisms that have a combined genetic and spiritual dimension. For example, it was reported that supernatural phenomena such as witchcraft, spells, and touching or laughing at a person experiencing a seizure can result in the individual acquiring or giving birth to offspring with epilepsy. A related bio-spiritual belief was that seizures are a form of spiritual possession induced by a spirit or deity residing within the patient’s body and capable of altering the individual’s state of consciousness as such inducing a seizure at its own volition. We previously indicated such culturally derived misconceptions that contribute to the pluralistic assumptions about the causation of epilepsy which then complicate healthcare utilization [6,19,25].

Indeed, the results revealed that even some of the AWE receiving biomedical treatment simultaneously sought treatment from pastoral and/or traditional healers. This is consistent with Koltai et al. (2021) finding that the belief in spiritual causation is the leading determinant of the decision to seek supernatural intervention, even among individuals who believe in biomedical etiologies [26], and the assertion that 78% of PWE in Uganda [27]and 60–75% of PWE in low-income populations [1,7,28] do not receive biomedical care. This suggests that the belief in supernatural causation predominates the biomedical causal attribution, and we found that in some cases it conflicts with effective epilepsy management. We, for example, found that some of our FDG and KII participants believed that epilepsy can only be supernaturally treated and that it can be cured. Some participants even reported testimonies of complete recovery from epilepsy, which may be attributed to undiagnosed conditions that are mislabelled as epilepsy in a community with several barriers to reaching biomedical care.

The belief that epilepsy can be completely cured has also been reported in other parts of Africa, with a recent study in Cameroon finding that 97.6% of traditional healers claimed effective treatment of epilepsy with plants, with 89.42% of them indicating that the patient completely recovers with no recurrence of seizures when this treatment is stopped [29]. Another recent study found that in Burkina Faso, traditional healers claim that they can cure all kinds of epilepsy, as long as the patients adhere to taboos, including staying away from fire and avoiding pork consumption as the fat reduces the effectiveness of the traditional medicine [30]. Indeed, in the current study we also found that falling into fire during a seizure is believed to indicate that epilepsy is no longer curable with traditional rituals and practices. The belief that epilepsy can only be cured for individuals who have never had fire burns has also been reported in other parts of Africa [31] and may contribute to lost hope and reduced interest in seeking epilepsy care. Furthermore, it was believed that there is a specific time of the month or lunar cycle when PWE are expected to experience seizures and that during this time they should remain indoors, avoid social situations, and also be adherent to treatment. The attribution of epileptic seizures to the lunar cycle has existed since ancient times [32,33], and the associated superstitions exist across the world [34]. However, previous studies have not found any link between the lunar cycle and epileptic seizures, except for some evidence of increased frequency of psychogenic non-epileptic seizures [32,34,35]. There is also some evidence of increased seizure frequency potentially linked to lunar nocturnal illumination and the associated sleep deprivation [36], but without conclusive evidence.

The belief in the curability of epilepsy through the use of traditional medicine and rituals may be a major hindrance to seeking biomedical care, which is believed to only control the seizures and with attendant adverse side effects. Previous research suggests that the reasons for the preference of traditional healers include their ready availability or easy accessibility [31], the use of less stigmatized cultural diagnosis or causal attribution [7], the claim that they can completely cure epilepsy [18], and their proclaimed holistic treatment approach [18,37], which is believed to target the spiritual, social, and biological dimensions of epilepsy. Furthermore, the traditional healers use a flexible payment approach [11] that includes the use of bartered goods [38] such as animals and other items, which makes the traditional treatment more affordable compared to biomedical care. Indeed, in Africa, the traditional model tends to predominate over the biomedical model, because it emphasizes holistic supernatural causal attributions [37]; with the easily accessed and affordable cultural and spiritual interventions addressing the biological, mental, social, and spiritual dimensions of epilepsy, and with a possibility of complete recovery from this condition, that is not claimed in modern medicine.

Kajumba et al. (2025) demonstrate that such epilepsy-related misconceptions not only contribute to emotional distress among PWE and their families, but also hinder health seeking behavior and treatment adherence [37]. In that previous publication, we recommend the use of health literacy interventions that minimize epilepsy-related misconceptions as a crucial step in promoting health-seeking behavior and effective epilepsy management. Our team has previously designed and piloted pioneer training programs [39,40], for healthcare workers involved in epilepsy care, with emphasis on co-creation of interventions through partnerships with members of the target communities as an important ingredient for ensuring cultural relevancy and enhancing the programs’ efficacy. The Advanced Delivery of Epilepsy Treatment (ADEPT) training program, for example, is intended for improving epilepsy-related knowledge among nonspecialized frontline healthcare workers and the pilot study revealed favourable outcomes. [39]. For increased acceptability and enhanced effectiveness, it is imperative that epilepsy literacy programs are culturally tailored and targeting key stakeholders such as parents, health workers, teachers, VHTs, local leaders, traditional healers, and religious leaders, involved in care of PWE, decision making, and/or policy formulation and implementation.

We found epilepsy-related misconceptions among these different categories of stakeholders despite their being influential members of community. Health literacy programs targeting these stakeholders should not only aim to change their attitudes about epilepsy, but also use them as agents of change in a bid to enhance efficiency in intervention delivery, acceptability, and efficacy. For example, traditional healers, religious leaders, health workers, VHTs, and teachers tend to earn public trust, and can use their social influence to induce attitude change, and promote epilepsy care. The VHTs, are responsible for linking households to health care [22,41], and may play a major role in the identification, sensitization, and referrals of PWE during their routine door-to-door home visits, as well as harnessing the collaboration between traditional healers and health workers.

4. Limitations

The focus of this study was the experience of a small sample of adolescents with epilepsy, and by design this sample did not include adult PWE, which may be a limitation to the generalizability of the qualitative findings. Future studies could include PWE of different ages, and also from different regions of the country and directly explore the relationship between causal beliefs and care-seeking patterns.

5. Conclusion

The results of this study indicate that PWE often simultaneously seek biomedical care and traditional and/or faith-based treatment. This suggests a high preference for non-allopathic care, which may be a major barrier to both uptake and retention of biomedical treatment. The high preference for these forms of care is rooted in the cultural beliefs about epilepsy, such as the assumption that it is a supernaturally caused illness which can be cured through divine intervention or traditional rituals. Effective epilepsy management could involve culturally-tailored epilepsy literacy programs to sensitize communities about epilepsy-related myths, its etiology, manifestation, and the benefits of biomedical care. The results of this study suggest that traditional and faith healers tend to provide frontline care and may play a major role in shaping epilepsy management. Collaboration channels need to be established between these healers and medical professionals with the ultimate goal of creating a linkage to biomedical care through traditional and faith healer referral channels. With the limited number of neurologists and psychiatrists providing specialty care, as well as limited accessibility to care and anti-seizure medications, it is also important to address the healthcare system infrastructure challenges.