Edited by: Albert Akpalu, University of Ghana, Ghana
Reviewed by: Nathália Visoná De Figueiredo, Federal University of São Paulo, Brazil; Felix Bongomin, Gulu University, Uganda
†ORCID: Daniel Gyaase
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In Ghana, over 270,000 people live with epilepsy, of which 70% do not receive treatment. Despite the high number of people with the condition, misconceptions exist about its causes and management in African regions. The study assessed the perceived causes and management of epilepsy among rural community dwellers in Ghana.
A qualitative approach and phenomenological design were employed for the study. The population comprised community dwellers in Berekum, a rural town in the Bono Region of Ghana. A convenience sampling technique was used to sample the participants. An in-depth face-to-face interview with a semi-structured interview guide was used to collect participant data. Data were analyzed using inductive thematic analysis.
A total of 15 participants were interviewed in the study, after which saturation was reached. Seven of the participants were men, and eight were women. Two categories emerged as the causes of epilepsy: socio-cultural and superstitious causes and biomedical causes. The socio-cultural and superstitious causes include “a manifestation or an influence of an evil spirit,” “family curse or disease,” “punishment from ancestors or gods of the land,” “having several convulsions,” “exposure to foam from an epileptic,” and “bites from an epileptic during seizures”, while the biomedical causes are “brain damage,” “blood group,” and “genetic makeup”. Consulting with the spiritual realm, pouring water on the person or washing the person's face, and putting a spoon in the mouth were identified by the participants as ways to manage epilepsy.
The causes of epilepsy are primarily linked to the supernatural, with the results indicating that rural community residents largely attribute epilepsy to “evil spirits”. This implies that the rural communities' knowledge about the causes of epilepsy is based on the social causation theory of disease and disability, which relates diseases to the supernatural. Management of the condition was mainly seen as spiritual.
Epilepsy is a chronic brain disorder characterized by recurrent nervous system disturbance resulting from a sudden excessive disorderly discharge of the aggregate group of neurons from the cerebrum, leading to disturbances of sensation, motor signals and symptoms, or psychiatric and behavioral aspects with or without loss of consciousness (
Epilepsy is reported as the most common neurological condition, with an estimated 50 million people across the globe living with it. A global estimate shows that ~80% of those with the condition live in low- and middle-income countries (
Despite the high number of people with the condition, misconceptions exist about its causes and management in African regions. In ancient times, when people had no understanding or knowledge of biomedical science, epilepsy was attributed to spiritual or religious afflictions (
Kassie et al. revealed a knowledge gap regarding the causes, nature, and treatment of epilepsy with varying traditional beliefs, attitudes, and practices worldwide (
The consolidated criteria guide for reporting qualitative research (COREQ) checklist (
The methodological orientation employed in this study was phenomenological design. The population comprised community dwellers in Berekum, a town in the Bono Region of Ghana. The inclusion criteria were people who are from the community or lived the community for more than 15 years and aged above 18 years.
A convenient sampling technique was used to sample the participants. Participants were recruited conveniently around roadsides, marketplaces, lorry stations, and churches. The purpose of recruiting participants from the area was to generate evidence on how epilepsy is perceived in the community. Potential participants were approached by the researcher face-to-face and invited to participate in the study. In all, 15 participants were recruited for this study because the saturation point was reached after interviewing this number.
An in-depth face-to-face interview with a semi-structured interview guide was used to collect participant data. The guide was developed by D.G. based on the objectives of the study and revised by Y.E., the supervisor. Questions were open-ended; however, probes and follow-ups were utilized when needed. All interviews were conducted by D.G. in Akan (Twi) for 2 weeks in March 2017. Field notes and audio recordings were taken during the interviews. The duration of interviews was between 30 and 40 min. The recorded interviews were transcribed by D.G. in Twi verbatim and translated into English, which were then sent to other co-authors (T.I.G., R.T., and G.A.O.) for quality checks. D.G. and G.A.O. are Akan with Twi as their first language (speaking and writing).
Data were analyzed using inductive thematic analysis. Notes taken during the interviews were processed together with the audio transcriptions. Data were studied carefully, and themes were developed based on participants' responses to questions. Two authors conducted the thematic analysis and coding which were reviewed and discussed by all study authors.
Demographic characteristics of participants.
| 20–29 | 2 | 13.3 |
| 30–39 | 4 | 26.7 |
| 40–49 | 7 | 46.7 |
| 50–59 | 2 | 13.3 |
| Male | 7 | 46.7 |
| Female | 8 | 53.3 |
| Employed | 4 | 26.7 |
| Self-employed | 8 | 53.3 |
| Student | 3 | 20 |
| No formal education | 2 | 13.3 |
| Basic | 7 | 46.7 |
| SHS | 2 | 13.3 |
| Tertiary | 4 | 26.7 |
SHS, Senior High School.
From participants' narratives, two primary themes, each with subthemes, emerged regarding the causes of epilepsy. These encompass (a) socio-cultural and superstitious factors and (b) biomedical factors. The socio-cultural and superstitious aspects encompass notions of “manifestation or influence of an evil spirit,” “family curse or disease,” “punishment from ancestors or gods of the land,” “frequent convulsions,” “exposure to an epileptic's foam,” and “bites from an epileptic during seizures”. Conversely, the biomedical causes consist of “brain damage,” “blood group,” and “genetic composition”.
As per the study's findings, epilepsy was perceived as a representation of an “
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Some participants, however, thought that epilepsy is not just about being possessed by the “evil spirit” but a sign of being burdened by an “evil spirit”. This manifests as epilepsy if the person can no longer bear the burden. A participant explained this in the following quotation:
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Some of the participants believed that epilepsy is used to sabotage individuals who are perceived as having a bright future, usually by a witch family member, as exemplified in the following quotation:
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Another participant added,
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Another socio-cultural notion among the participants concerning the cause of epilepsy is the idea that the condition is restricted to specific cursed families. Consequently, individuals are thought to not merely acquire epilepsy by chance but rather inherit it as a familial or bloodline curse. To them, some families are cursed to give birth to individuals with epilepsy, as stated by a participant,
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Another respondent added,
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The study uncovered that when an individual commits a transgression (engages in misconduct, commits crimes, performs evil actions, or acts immorally) against the deities or forebears of a community, the wrath and displeasure of these entities descend upon the person, and the consequence they face is the onset of epilepsy. Epilepsy, according to this belief, is acquired.
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Similarly,
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Participants also perceived that if an individual experiences numerous convulsions during their childhood and proper measures are not taken to address them, it could lead to the development of epilepsy. According to participants, certain parents underestimate the gravity of convulsions and assume that the child will naturally recover over time. Consequently, these parents do not seek timely medical attention for their child, resulting in the child eventually growing up with epilepsy. A participant explained:
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Some participants attributed frequent convulsions to excess phlegm in a person's body, which, if not cared for adequately, could later result in epilepsy. A participant noted:
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As per the accounts of certain participants, it is perceived that exposure to the foam produced from the mouth of an individual experiencing an epileptic seizure could lead to the development of the condition. Consequently, people take precautions to avoid contact with the foam in order to prevent acquiring the condition themselves. As explained by a participant,
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Furthermore, participants explained that one could become epileptic when a person with epilepsy bites them:
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Some participants associated epilepsy with biomedical factors, including brain damage resulting from accidents as well as incidents occurring during pregnancy and childbirth. According to this viewpoint, when an accident occurs and an individual experiences a brain injury, the person may develop epilepsy. It has been noted that when there is any injury to a child's brain during pregnancy or childbirth, the child may develop epilepsy after birth. Two participants explained this in the following quotations:
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Some other participants linked the cause of epilepsy to the compatibility of the parent's blood groups. It was noted by participants that some blood groups are not compatible. Hence, when these individuals marry and give birth, the child is likely to develop complications such as epilepsy. A participant explained:
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Additionally, some participants reported that epilepsy is genetic; hence, one may acquire the condition if either of the parents has it.
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The following themes emerged in the community's management of epilepsy: “consultation from the spiritual realm,” “pouring water on the person or washing the person's face,” and “putting a spoon in the mouth”.
The study's findings revealed that epilepsy is interpreted as a spiritual affliction that impacts individuals. Participants hold the view that this ailment or state cannot be remedied through medical interventions but rather requires spiritual remedies. Consequently, seeking counsel from individuals possessing spiritual abilities, such as fetish priests, witch doctors, mallams (Muslim ritualists in Ghana), pastors, and similar practitioners, is perceived as the most effective approach for treating the condition. Several of the participants explained as follows:
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Some participants disclosed that they would splash water on the individual or cleanse their face in order to restore their consciousness, as indicated by one participant:
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Participants also noted that dousing a sleeping person with water leads to their awakening, similarly, pouring water on an unconscious individual causes them to regain consciousness. A participant elaborated:
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Some participants also reported that another way to prevent a person with epilepsy from biting the tongue is to insert a spoon in the person's mouth.
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This study was conducted in rural communities in Ghana to assess the perceived causes and management of epilepsy. Epilepsy is one of the major chronic non-communicable diseases of the brain in Ghana, with ~270,000 people living with the condition (
The finding that evil spirits cause epilepsy is not new, but this old-age misconception has become deep-seated in Ghana, especially in rural areas. The findings from this study seem to reinforce this misconception about the cause of epilepsy. This finding is similar to Abasiubong et al.'s study, which revealed that in the olden days when people had no knowledge or understanding of biomedical science, epilepsy was attributed to a spiritual or religious affliction (
Studies have revealed that what people perceive most to be the cause of epilepsy among rural dwellers is witchcraft. In research led by Abasiubong et al. regarding how traditional healers perceive the causes of epilepsy, witchcraft stood out as the prevailing factor (
The study findings show that the social causation theory of disease and disability is dominant in rural areas. According to Krieger, the theory views sickness and disease as the consequences of disintegration at the social level through anti-social behavior and supernatural intervention or possession (
Epilepsy is perceived as a familial affliction or a generational curse that casts its shadow upon family members. The findings indicate that epilepsy serves as an indicator that a family is under a curse. It is believed that in times past, specific families maintained associations with idols and fetish priests. As these families distanced themselves from idol worship, they allegedly incurred curses, resulting in ailments meant to disgrace the family. Some members of these families now bear the weight of these curses, manifesting as various diseases, including epilepsy. Consequently, epilepsy is viewed as a condition befalling cursed families. Additionally, it is regarded as a sign alerting a particular family to their cursed state, prompting them to seek aid or appeasement from the very idols and fetish priests they once had relations with. Masia and Devinsky stated that epilepsy was seen as a curse for possessing evils, mainly resulting in the isolation of the affected person and the family (
The study further reveals punishment from the gods or ancestors for sins committed as a cause of epilepsy. When an individual transgresses or violates the sanctity of the gods, it is held that the gods' wrath befalls that person, resulting in the onset of epilepsy as a form of retribution. This individual is said to experience epilepsy so that the broader community can draw lessons from it. Essentially, epilepsy is considered a means of compelling people to adhere to moral standards. Evidence from a study by Abasiubong et al. (
In addition, the study identified brain damage as the cause of epilepsy. Birth complications can result in brain damage, which in turn might lead to the development of epilepsy. Similarly, accidents involving head injuries can also be a factor in causing epilepsy. Consequently, for certain participants, epilepsy is understood as a condition arising from brain damage. Notably, it is reported that 25% of epilepsy cases are preventable; however, a significant proportion of these preventable cases are concentrated in Africa due to elevated rates of prenatal and perinatal complications (
A bite from an epileptic patient experiencing seizures or exposure to foam during seizures was perceived as a cause of epilepsy. People believe that epilepsy is contagious (
Convulsions and an abundance of phlegm within the body were considered responsible for the onset of epilepsy. A surplus of phlegm in an individual's system was believed to trigger convulsions, and if these convulsions were not properly addressed during childhood, they could subsequently evolve into epilepsy. Certain parents, who lack an understanding of the severity of convulsions, presume that with the passage of time, the child afflicted by convulsions will naturally overcome them. Consequently, they refrain from seeking prompt medical intervention for their child, which ultimately leads to the child developing epilepsy at a later stage. The findings support Annegers et al.'s study, which found febrile convulsions as a cause of epilepsy (
Predominantly, epilepsy was perceived as a condition intertwined with “evil spirits”, thereby leading to the approach of seeking guidance from individuals possessing heightened spiritual abilities for its management. A similar finding was discussed in the toolkit “
The causes of epilepsy are primarily associated with supernatural factors. The findings indicated that individuals residing in rural communities predominantly attribute epilepsy to “malevolent spirits”. This suggests that the rural population's understanding of epilepsy is rooted in the social causation theory of disease and disability, which connects ailments to supernatural forces. The approach to managing the condition was largely spiritual in nature. Consequently, the study suggests the implementation of comprehensive health education programs concerning neurological and mental health conditions, given their substantial association with supernatural beliefs. Moreover, future investigations should explore the ramifications of these findings on the lived experiences of individuals with epilepsy. Finally, research is warranted to ascertain the prevalence and connections of epilepsy-related injuries.
The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.
Approval for the conduct of the study was taken from the Center for Disability and Rehabilitation Study, KNUST. The protocol was reviewed by the Head of Department and the Supervisor of the student work before the study commenced. Written informed consent to participate in the study was from the participants before their involvement.
DG: conceptualization, data collection, transcription, coding of themes, interpreting the data, writing the original draft, and final review and editing. YE: supervision, coding of themes, and review and editing. TG, RT, GA-O, IO, and WM: review and editing. All authors contributed to the article and approved the submitted version.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The handling editor AA declared a past collaboration with the author IO.
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