Knowledge and misconceptions about epilepsy among people with epilepsy and their caregivers attending mental health clinics: A qualitative study in Taenia solium endemic pig‐keeping communities in Tanzania

Abstract

Objective

Taenia solium (T. solium) neurocysticercosis (NCC) affects the central nervous system and is associated with 30% of acquired epilepsy in some endemic areas. Epilepsy is a stigmatizing disease in many societies and people with epilepsy (PWE) and their families experience discrimination. This study aimed to explore the knowledge, perceptions, and experiences of epilepsy among PWE and their caregivers attending mental health clinics.

Methods

In T. solium endemic areas of Tanzania, PWE and their caregivers attending mental health clinics were identified and their informed consent was sought prior to study participation. In‐depth interviews were conducted in Swahili language and analyzed thematically. The coding was undertaken by two independent researchers using NVivo (Version 12, QSR International).

Results

Thirty‐eight participants were interviewed. Three themes were identified during the analysis, namely, knowledge about epilepsy; perception of epilepsy; and experience with epilepsy among PWE and their caregivers. Participants commonly defined epilepsy as a “falling disease,” perceived to be caused by witchcraft, and were unaware of the association between T. solium and epilepsy. Stigmatization of epilepsy was reported as a problem. Reported treatment patterns after the initial onset of epilepsy varied widely; however, patients usually began treatment with traditional healing methods, and only later opted for biomedical treatment. Patients had generally poor adherence to antiseizure medication, which could be caused by inadequate knowledge or irregular supply.

Significance

Level of knowledge about epilepsy was low, and NCC was not mentioned as a cause of epilepsy among participants. Epilepsy was generally perceived to be the result of witchcraft, evil spirits, or curses. Health education is needed, including an explanation of the model of T. solium transmission and the insistence on hygiene measures. This could reduce the number of new infections with T. solium, improve access to prompt biomedical treatment, and improve the lives of PWE.

Key points.

• In this qualitative study, we found poor knowledge about epilepsy, particularly about its causes, among people with epilepsy and their caregivers.

• We also found misconceptions about epilepsy being associated with witchcraft and a preference for traditional healing methods, the use of which can delay the start of effective biomedical treatment with drugs.

• Although all study participants came from Taenia solium endemic areas, they did not mention the link between epilepsy and pork tapeworm.

• This study showed little changes in knowledge, perception, and experience with epilepsy compared to similar studies done 10 years ago.

• There is an urgent need to provide epilepsy health education packages targeting different community groups based on the local context.

1. INTRODUCTION

Epilepsy is characterized by two or more episodes of unprovoked seizures at least 24 h apart. ¹ Epilepsy is stigmatizing neurological disorder in many societies, and therefore, people with epilepsy (PWE) and their families experience discrimination within their communities. ² Worldwide, 50 million people are estimated to have epilepsy, whereby low‐ and middle‐income countries have a higher burden than high‐income countries. ³ , ⁴ , ⁵

In highly endemic areas for Taenia solium, up to 30 percent of acquired and avoidable epilepsy cases are caused by neurocysticercosis (NCC) after ingestion of T. solium eggs, with wide variation across regions. ⁶ , ⁷ , ⁸ , ⁹ NCC manifests in many ways, but most commonly with epileptic seizures or severe progressive headaches. ¹⁰ , ¹¹ , ¹²

Misconceptions, cultural beliefs, and stigmatization of epilepsy have been reported in different parts of the world; from western countries, Asian countries, and elsewhere. ¹³ , ¹⁴ Studies showed evidence of misconceptions, myths, and beliefs among different educated populations starting from school teachers as well as university students. ¹⁵ , ¹⁶ , ¹⁷ One study from Burkina Faso reported witchcraft as a cause of epilepsy. ¹⁸ However, there have been few available reports on misconception intervention and stigma reduction studies, especially in Sub‐Saharan Africa. ¹³ , ¹⁹ , ²⁰

Studies in Ethiopia and the Kilimanjaro region of Tanzania have examined knowledge about, perception of, and experience with epilepsy in PWE, and both reported limited knowledge and many misconceptions. ²¹ , ²² , ²³ Other research has shown that people with little awareness and knowledge about epilepsy tend to have negative attitudes toward PWE and misperceptions about the disease. ²⁴ , ²⁵ , ²⁶ Furthermore, studies exploring the understanding of T. solium yielded limited knowledge of this as a cause of epilepsy and high levels of misconceptions. ²⁷ , ²⁸ The present study aimed to further determine the epilepsy‐related knowledge, perceptions, and experiences among PWE and their caregivers attending mental health clinics in T. solium endemic areas of Tanzania.

2. METHODS

2.1. Study design

This was a hospital‐based qualitative study that used in‐depth interviews with two different populations, i.e. PWE and their caregivers. Close observation of participants' behavior, movements, and responses was a supplementary method used to gather information on the participants' knowledge about, perception of, and experiences with epilepsy during the interview.

2.2. Study setting

This study was part of CYSTINET‐Africa project–a large network project with several studies on T. solium human and porcine cysticercosis and taeniasis. We recruited from Mental Health Clinics, where PWE usually receive treatment.

2.2.1. Chunya

Chunya District Council is among seven (7) local authorities in Mbeya Region.

Based on the National Population and Housing Census of 2012, population projection of 2022, the district has a population of 211 039. ²⁹ The district has a growth rate of 3.7% and is inhabited by different ethnic groups including Kimbu, Bungu, Guruka (semi‐Safwa), Nyakusa, Nyamwezi, Sukuma, Barbaig, and Hehe.

The main economic activities include mining, especially gold mining, which is usually carried out by artisans. Other activities include forestry, beekeeping, subsistence farming, and livestock keeping whereby a free‐range style of pig keeping is practised.

2.2.2. Kongwa

Kongwa District Council is one of the eight councils in Dodoma region. It covers 4041 square kilometers of land with three Divisions, 22 Wards, 87 Villages, and 3247 hamlets.

The population of Kongwa District is currently projected to be 387 701 with a growth rate of 2.4% per annum. The two main dominant ethnic groups in Kongwa are the Gogo and Kaguru.

Agriculture is the major base for economic activities in Kongwa District in which subsistence farming and livestock keeping (local breeds) including free‐range pig keeping are the dominant modes of production.

2.3. Study population

The PWE and their caregivers from the urban and rural populations of Kongwa and Chunya Districts who were attending mental health clinics were included. Those who were not able to express themselves were severely sick, and those who refused to consent were excluded from the interviews.

2.4. Sampling technique

A list of PWE was obtained from the registry of attendance at mental health clinics. Participants from the prepared list were purposively selected and invited for interview, with recruitment until data saturation was achieved. The selection included male and female participants of different ages and areas of residence. This exercise was assisted by the doctor in charge of the mental clinic and was done on different occasions (between the 27th of September to the 1st of October 2021 at Kongwa District hospital; and from the 1st of November to the 6th of November 2021 at Chunya District hospital). Each PWE was instructed to come with his/her caregiver. A caregiver was defined as a person who supports the PWE in one aspect or another including living with the PWE, giving support in treatment costs, and/or any of the daily life activities.

2.5. Data collection methods and tools

Two experienced scientists conducted the interviews, the first a social scientist from Kilimanjaro Christian Medical University College (VK) and the second a research scientist affiliated with both Kilimanjaro Christian Medical University College and The National Institute for Medical Research (CM). Both scientists were Swahili speakers. One nurse from Kongwa District hospital who is also a Swahili speaker supported the enrolment and data collection.

All interviews were conducted in the attending clinician's room and no other activity was allowed in the room at the time of interview. An emergency plan was prepared to respond to any seizure event during interviews, and this included stopping the interview and managing seizures. There were two in‐depth interview guides (IDIs), one for PWE themselves and the other for caregivers of the PWE. The two groups were interviewed separately. The topics for the IDI for PWE were “Knowledge about epilepsy”, “Perception of epilepsy” and “Experience/Practice of living with epilepsy”. The IDI for caregivers of PWE had the following themes: “Initial identifying/knowledge questions”, “Epilepsy diagnosis and treatment” and “Sociocultural issues.” The recruitment of participants for IDI was halted upon attainment of thematic saturation. All interviews were tape‐recorded, and extra handwritten notes were taken. Observation of the responses and general behavior and movements of the interviewees were also noted. The computer program f4transkript V.5.70.2 was used for the transcription of data from the audio recordings.

2.6. Data analysis

Data were analyzed through a thematic analysis procedure. The recorded audio file was transcribed and translated. The data were repeatedly read to obtain familiarization, and pre‐specified themes were generated. Data were coded to their respective themes with the aid of NVivo 12; QSR International. The collected data were translated and interpreted by three local researchers (EFM, YL, and MB) led by CM and VK, and direct quotes from the study participants were presented to support the obtained themes.

2.7. Ethics statement

This study was approved by The Kilimanjaro Christian Medical College Research Ethics and Review Committee (CRERC); Certificate No 2450. Individual written informed consent was obtained from all participants involved in the study.

3. RESULTS

3.1. Demographic characteristics of the participants

A total of 38 participants were recruited and interviewed at both sites together. From Kongwa site 23 participants were recruited (12 PWE and 11 caregivers) and from Chunya site 15 participants were recruited (10 PWE and 5 caregivers). Twenty‐three participants were male, 23 were younger than 40 years, 23 were married, 24 had primary education as their highest level of education, and 21 were living in urban areas. The participants' demographic characteristics are summarized in Table 1.

TABLE 1.

Demographic characteristics of the study participants (N = 38).

		Kongwa		Chunya		Total		Overall
		PWE n (%)	CG n (%)	PWE n (%)	CG n (%)	PWE n (%)	CG n (%)	Total n (%)
Sex	Male	7 (58)	9 (82)	5 (50)	2 (40)	12 (55)	11 (69)	23 (61)
	Female	5 (42)	2 (18)	5 (50)	3 (60)	10 (45)	5 (31)	15 (39)
Age	<39	8 (67)	3 (27)	8 (80)	4 (80)	16 (73)	7 (44)	23 (61)
	40–59	4 (33)	5 (45)	2 (20)	0 (0)	6 (27)	5 (31)	11 (29)
	>60	0 (0)	3 (27)	0 (0)	1 (20)	0 (0)	4 (25)	4 (11)
Marital status	Single	8 (67)	1 (9)	1 (10)	1 (20)	9 (41)	2 (13)	11 (29)
	Married	3 (25)	9 (82)	7 (70)	4 (80)	10 (45)	13 (81)	23 (61)
	Divorced	1 (8)	1 (9)	2 (20)	0 (0)	3 (14)	1 (6)	4 (11)
Education	No education	5 (42)	4 (36)	0 (0)	2 (40)	5 (23)	6 (38)	11 (29)
	Primary school	7 (58)	7 (64)	8 (80)	2 (40)	15 (68)	9 (56)	24 (63)
	Secondary or higher	0 (0)	0 (0)	2 (20)	1 (20)	2 (9)	1 (6)	3 (8)
Residence	Urban	5 (42)	5 (45)	6 (60)	5 (100)	11 (50)	10 (63)	21 (55)
	Rural	7 (58)	6 (55)	4 (40)	0 (0)	11 (50)	6 (38)	17 (45)

Abbreviations: PWE, People with epilepsy; CG, Caregivers.

3.2. Theme 1: Knowledge about epilepsy among people with epilepsy and their caregivers

The results on knowledge about epilepsy are separated into three subcategories

• Knowledge about causes of epilepsy

• Knowledge about transmission of epilepsy

• Knowledge about treatment of epilepsy

Questions on knowledge of epilepsy were asked of all participants. The questions were reiterated if they were not well understood. The participants were asked to define the term epilepsy. The probes used were based on the signs and symptoms of epilepsy, the beliefs they had about epilepsy, and how they treated epilepsy.

Some individuals gave multiple responses to the questions. Twenty‐five responses were obtained from 20 participants; two participants from Kongwa could not respond appropriately to the question due to their very low cognitive skills, therefore they were excluded from the interview. The respondents' explanations of epilepsy were based on their local terms and their experience rather than their biomedical knowledge. Therefore, 11 responses thought epilepsy are a falling down disease (Ugonjwa wa kuanguka in the Swahili language), one of them defined epilepsy as a disease associated with seizures (degedege in Swahili), two said epilepsy is a confusion (kuchanganyikiwa), and two respondents said epilepsy was a loss of consciousness (kupoteza fahamu). Other responses given by two participants were brain problem (matatizo ya ubongo), low blood pressure (presha ya kushuka), dizziness (kizunguzungu), and fainting (kuzimia) (Table 2).

TABLE 2.

Knowledge about epilepsy (“define the term epilepsy”) among people with epilepsy (N = 28).

English	Swahili	n
Falling down disease	Ugonjwa wa kuanguka	11
Brain disease/problem	matatizo ya ubongo	3
Low blood pressure	presha ya kushuka	2
Loss of consciousness	kupoteza fahamu	2
Confusion	Kuchanganyikiwa	2
Dizziness	Kizunguzungu	2
Fainting	Kuzimia	2
Cannot explain	hawezi kuelezea	2
Seizures	Degedege	1
Danger of losing mind	Hatari ya kupoteza fahamu	1

“I just know it's a falling disease” (Male PWE, 48 years old)

“We are told not to sit close to the fire, not to fetch water, cooking and being close to a water source, it's not allowed” (Female PWE, 30 years old)

Sixteen caregivers were interviewed and had the following responses. Sixteen (16) responses said epilepsy is a disease that is characterized by falling, seizures, frothing, and tongue or lips biting. Two responses said epilepsy is a “falling down disease” and one mentioned that epilepsy is a disease characterized by severe headache and dizziness.

“When a person falls and starts shaking or bubbles are passing out that is a sign of epilepsy” (Male caretaker of PWE, 64 years old)

“When he fell, he defecated, the mouth twisted, and the saliva flowed freely from the mouth” (Female caretaker of PWE, 48 years old)

3.3. Theme 2: Perception of epilepsy among people with epilepsy and their caregivers

Questions on the overall awareness of epilepsy and perception of personal risks were asked; probing was done on the factors perceived on epilepsy and if the interviewee had any risk of developing epilepsy and if he/she knew any possible causes of epilepsy, especially in their community.

Ten of 18 responses from the PWE said that epilepsy is caused by witchcraft (uchawi or kurogwa in Swahili) performed out of jealousy among people such as neighbors and close relatives who bewitch the victim because they do not want him or her to progress in his/her business, academic studies, or any developmental activity, especially income‐generating activities. Others reported that epilepsy is caused by nonpersonal evil spirits. A few said epilepsy is a hereditary disease that can be transmitted in the family or clan. Some believed that epilepsy is a contagious disease and can be acquired if someone gets into contact with saliva or frothing from PWE, especially during seizure attacks. Others said that epilepsy is not a contagious disease. Because of the belief in witchcraft, PWE normally attended to traditional healers for treatment. None of the respondents said anything about pork tapeworms as one of the causes of epilepsy in the community

“Epilepsy is caused by witchcraft, a person can make you epileptic because he/she wants to get wealth through you” (Male PWE, 30 years old)

“Evil spirit causes epilepsy, you feel like a person is directing you that leave that place go and sit there, that is when you realize like they are evil spirits” (Female PWE, 37 years old)

“Epilepsy is not a contagious disease, it is inborn and it's in two ways; the person can be fed, you dream like you are eating food after eating you are already bewitched you start getting problems” (Female PWE, 37 years old)

Caregivers also believed that epilepsy is caused by witchcraft and is contagious, especially if a person comes into contact with saliva or frothing from a patient during a seizure attack. They believe that if a disease is caused by witchcraft, then traditional treatment is more likely to be successful. One respondent said that epilepsy can be caused by foodstuffs, especially fatty foods, and another one believed that epilepsy is caused by HIV/AIDS.

“The issue is that many people believe that epilepsy is contagious … therefore they become afraid of touching patient's saliva” (Female Caretaker, 22 years old)

“When we went to the witchdoctor, they said this child was bewitched by her relatives” (Female Caretaker, 67 years old)

3.4. Theme 3: Experience with epilepsy among people with epilepsy and their caregivers

The majority of the PWE said what happen to them was an experience of epilepsy. This included dizziness, stary vision followed by darkness, then falling and losing their consciousness. A few participants mentioned nausea, severe headaches, and blurred vision. Most of the PWE reported having started with traditional treatment first and later shifted to pharmaceutical treatment, especially when traditional treatment had failed. They would usually start with traditional treatment on the belief that epilepsy is associated with witchcraft or evil spirit.

The PWE on antiseizure medication (ASM) reported failing to take their ASM regularly due to shortages of drugs from their regular suppliers which were generally public facilities. They also reported that they would not usually start treatment using ASM until they get testimonies of other PWE whose conditions improved after undergoing ASM treatment, a reason provided to explain delayed initiation of pharmaceutical treatment. Many of them complained of being stigmatized by different people including close relatives, neighbors and friends. Others reported being stigmatized in their businesses and others reported experiencing difficulties getting a job or employment once he or she is recognized as suffering from epilepsy.

“Your parent is the only one who can be good to you; … but there is no human being who is happy to offer you employment if he knows that you have epilepsy” (Male PWE, 42 years old)

“… for people with epilepsy, there are those who are aware and disclose it, and there are those who hide it, but after some time when epilepsy gets serious, they fail to handle it and finally come out and disclose it. Otherwise, many sick people are not getting proper care” (Male caregivers, 64 years old)

The majority of the caregivers reported their experiences of seeing their relatives getting seizure incidents for the first time. They reported taking care of their patients but would begin by taking their patients to traditional healers and resorted to hospitals for treatment only after traditional treatment failed. Most of the caregivers admitted that the conditions of their patients would usually improve after starting formal medical treatment using ASM as opposed to using traditional treatment methods.

“Education about epilepsy would have been extended to villages because those in urban areas, …will normally start with local herbs by traditional healers, but when the situation gets worse, they would despair or take the patient to the hospital very late” (Male caregiver, 64 years old)

4. DISCUSSION

In this study, we analyzed three themes related to epilepsy, namely, knowledge about, perception of and experience with epilepsy among PWE and their caregivers.

Participants defined and explained epilepsy based on their knowledge and both, PWE and their caregivers, defined epilepsy as a disease of falling (Ugonjwa wa kuanguka) or seizures (degedege), although the formal definition of degedege is febrile childhood convulsions. Several participants associated epilepsy with witchcraft and evil spirits, and a few believed that epilepsy can be inherited. Regarding experience with treatment, most PWE start with traditional healing methods and resort to formal health facility treatment when traditional methods fail. Poor knowledge and misconceptions about epilepsy and T. solium have been documented by previous studies carried out in different areas of Tanzania including hard‐to‐reach communities. ²⁷ , ³⁰ , ³¹ Some of the studies were carried out over 10 years ago, and our study suggests that little has changed since then in terms of general knowledge and perceptions regarding epilepsy.

4.1. Knowledge

Participants including PWE and their caregivers termed epilepsy as a “disease of falling”. Most of them defined epilepsy with regard to the signs they have seen from their relatives during epileptic seizures or what they have been told by those who witnessed what happens. Most PWE reported experiencing dizziness, a bad smell, and virtual hallucination (aura) before losing their consciousnesses. The results of the current study are in alignment with those of a similar study done in the Kilimanjaro area, wherein limited knowledge about epilepsy was also identified. However, this study had a different purpose and was done in the community and not a healthcare setting. ²² Another study that also showed a low level of knowledge about epilepsy was conducted in Ethiopia and used a quantitative research method which was different from the qualitative methods used in the current study. ³²

During this study, T. solium, the pork tapeworm, was not evoked by anyone as a cause of epilepsy; however, it was not probed for either, mainly to avoid producing biased responses from participants. NCC is common in Tanzania, and a recent study has found a prevalence of NCC of more than 30% among PWE in an area close by the location of this study. ³³ NCC has also been described in urban areas of Tanzania where the disease was expected to not be prevalent. ³⁴ Results from a study conducted in northern Tanzania showed that of the 25 participants who tested serologically positive for cysticercosis and were diagnosed to have NCC, 74% of them had a history of epilepsy. ³⁵ In Tanzania's T. solium endemic regions, the prevalence of intestinal T. solium tapeworm infection in people ranges from 2% to 5%, with cysticercosis being prevalent in 16% of cases. ³⁶ Therefore, the presence of NCC in our study area seems to be well established, although the link between the two diseases, epilepsy and NCC, has not yet been made by PWE and their caregivers, most likely owing to the lack of epilepsy health education overall and, in particular, about the regionally prevalent causes of epilepsy.

Overall, a lack of knowledge about epilepsy and its causes among PWE and their caregivers seems to be a widespread phenomenon and therefore the inclusion of epilepsy into the health education agenda is of great importance. This can be done in the traditional way through public health campaigns, health education by healthcare workers in health facilities or by community healthcare workers at people's homes. However, these days there are more innovative ways of increasing health knowledge such as using short video clips on disease causes, presentation, and treatment, a model that has shown to produce good results in terms of knowledge retention over time. ³⁷

4.2. Perception

Many participants perceived epilepsy as associated with witchcraft, evil spirits, and a curse, but some participants associated epilepsy with hereditary factors. Misconceptions about epilepsy have been documented in different studies including a study done in Tanzania with similar findings. ²² , ²³ Many of those who associated epilepsy with witchcraft and evil spirits also believed that epilepsy is a contagious disease and can be transmitted by getting into contact with saliva from the patient, especially during seizures. Their belief is what made them seek treatment from traditional healers in the first place before resorting to hospital medicine and treatment with ASM. The present results correlate with the those from a study in Benin, ³⁸ showing 97.7% of participants mentioned epilepsy as being caused by witchcraft and 90.6% perceived epilepsy as a contagious disease, of which 98.1% of them pointed out that saliva from PWE was a mode of transmission. In our study, the perceptions of caregivers were not much different from those of PWE, and one reason for this could be that PWE tends to trust whatever their caregivers believe or say about their conditions.

Impaired cognitive function seemed to be present among many PWE, especially those who delayed taking ASM. This was demonstrated by the fact that some of the PWE were not very good at responding to questions and took a long time during the interview. The severity of their impaired cognitive function was different but the trend aligned with the extent of the delayed initiation of ASM. Two of the participants had significantly lower levels of cognitive function than the other PWE, and these were excluded from the study since they could not sufficiently understand or respond to the interview questions. The medical history of these two people showed that they started formal medical treatment only after more than 10 years of using traditional healing methods (herbs). Such an incidence of these two participants supports the findings from other studies that frequent seizures over a prolonged period are related to impaired cognitive function. ³⁹

4.3. Experience

Participants reported their experience of what they went through and/or how they were affected by epilepsy. The experience was based on the signs/symptoms they have reported including epileptic seizures and injuries as well as reduced productivity in the family if they are not treated promptly. PWE would normally start with traditional healing methods and only later resort to formal health facility treatment which normally starts late after the failure of traditional medication. A similar experience is reported in a study in Guinea; however, the study used quantitative methods which were different from the qualitative methods used in the current study. ⁴⁰ In our study, participants (PWE and their caregivers) reported their experience with ASM including irregular drug intake and switching to different types of ASM. This was caused by stock‐outs and certain types of ASM not being available in the public facilities, but also the inability to purchase ASM from private drug shops or facilities due to lack of money. Many of our participants reported their onset of epilepsy at around 40 years of age; this may point toward NCC as a cause of their epilepsy as epilepsy in people with NCC usually starts later in life. ⁴¹ , ⁴² , ⁴³ They also reported being stigmatized as PWE or having PWE relatives. Similar results are reported in other studies. ³⁸

4.4. Strengths and limitations

This study focused not only on PWE but also included their caregivers. In addition, it has used a rigorous qualitative design including in‐depth interviews with PWE and their caregivers, verbatim interview transcription, and subsequent thematic analysis. Studies on disease knowledge, particularly knowledge about and perception of epilepsy, in the past have mainly used questionnaires in a structured or semi‐structured design, but not in‐depth interviews through which richer and more nuanced information can be obtained.

As is the case with most qualitative studies, there are limitations to the generalization of the findings to other communities outside Kongwa and Chunya. There may also be some slight deviations from the original terms resulting from translation. Recall biases are also inevitable as some of the questions referred to events that occurred years before this interview. PWE were a vulnerable population, some with cognitive deficits, and responded very slowly to questions which lengthened the time to complete interviews when compared to the time taken by their caregivers, and this could have produced some differences in responses. In addition, the relationship between epilepsy and T. solium was not explored further by probing questions and should be included in future studies on knowledge about epilepsy in T. solium endemic areas.

5. CONCLUSION

In Tanzania, knowledge about epilepsy is limited, and perceptions of epilepsy among PWE and their caregivers is still associated with misconceptions leading to stigmatization and discrimination. None of the participants evoked T. solium as a potential cause of their epilepsy, even though they all lived in a T. solium endemic area. Surprisingly, the results from our study were not much different from those of a study conducted over 10 years previously. The majority of the participants interviewed preferred to start with traditional healing methods first and only later opted for ASM from health facilities. Treatment adherence to ASM was poor due to frequent stock‐outs, irregular supply of ASM or inability to purchase the drugs due to financial constraints. The results of our study call for an urgent inclusion of epilepsy into the national health education agenda, focussing on potential causes, such as T. solium, and appropriate disease management, within locally adapted and context‐specific health education packages.

CONFLICT OF INTEREST STATEMENT

None of the authors has a conflict of interest to declare. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Makasi CE, Kilale AM, Ngowi BJ, Lema Y, Katiti V, Mahande MJ, et al. Knowledge and misconceptions about epilepsy among people with epilepsy and their caregivers attending mental health clinics: A qualitative study in Taenia solium endemic pig‐keeping communities in Tanzania. Epilepsia Open. 2023;8:487–496. 10.1002/epi4.12720