Illness and treatment perceptions of patients with epilepsy attending their treatment at tertiary hospital in Addis Ababa, Ethiopia–a qualitative exploration

The study was conducted in Tikur Anbessa Specialized Hospital located in Lideta Sub City, Addis Ababa, Ethiopia. It is a tertiary hospital run by Addis Ababa University. The hospital has a Neurology Clinic that serves at least 12,000 ambulatory patients annually. The clinic was run at the time of the study by two consultant neurologists, 10 to 12 residents in the Neurology and Internal Medicine Specialty programs and five nurses.

Participants and recruitment

Patients with epilepsy who are following treatment in the outpatient specialty clinic of the hospital were selected using a purposive sampling procedure. The criteria for inclusion of study participants included being 18 years of age or above, on anti-epileptic medications for at least a year and not having any other serious debilitating co-morbidity or overt psychiatric condition and able to communicate in Amharic, the official language of the country that is also widely spoken. Being a healthcare provider was an exclusion criterion. Additionally, efforts were made to ensure variation in age, sex, education, duration of illness, type of epilepsy and among other factors.

Study participants were recruitment with the support of the Clinic nurses who provided information about the study to the patients and then helped with the preliminary identification of patients for possible inclusion in the study. Following this, the first author approached patients for further screening to check eligibility. Those who fulfilled the criteria were then provided further information about the study and their consent sought for inclusion in the study. Accordingly, 14 patients were recruited as study participants based on the principle of data saturation. Their number was determined based on saturation of interview themes which was achieved at participant number 11 but three more patients were interviewed after the saturation of data was attended to determine real saturation was reached.

Data collection

Data collection was carried out by the first author using in-depth interview while field notes were taken of the interview settings, study participants’ nonverbal message and any other issue that was relevant. The interviews ranged from 20 to 30 minutes and were carried out in a secluded place of the hospital compound which had minimal noise and disturbance. The interviews, which were audio-recorded, were carried out in Amharic which is the official language and widely spoken in Addis Ababa. The interview guide, which was an adaptation of Kleinman, (1978), consisted of open-ended questions related to patients’ perception of epilepsy and its treatment (Annex).

The audio-recorded data were transcribed verbatim into Microsoft (MS) Word and then analyzed along with field note using the thematic approach. The first author carried out data analysis in collaboration with the last author soon after the first three interviews to guide further data collection until saturation of themes achieved. The analysis was informed by Kleinman's, (1978) model and Horne’s medication Necessity-Concerns conceptual framework (Horne et al., 2007). This did not, however, limit the open coding of other data which did not fit with the above models. Data was organized or categorized into themes and subthemes. Finally, synthesis and selected participant quotes were translated from Amharic into English and reported.

Trustworthiness

An effort was made to recruit patients that have a wide variety in terms of socio-demographic characteristics, year of onset of epilepsy and type of epilepsy. The investigator took detailed field notes and used an audio recorder with the consent of the study participants that enhanced the reliability of the interviews. The analysis and interpretation were conducted collaboratively among the three authors who had different backgrounds and allowed for different perspectives and thus investigator triangulation. A summary of the major findings was presented to select five of the study participants, all of whom concurred.

This study was approved by the Ethics Committee of the School of Pharmacy, Addis Ababa University (ERB/SOP/61/04/2016). A formal letter was also written to the Department of Neurology from the Department of Pharmaceutics and Social Pharmacy, SOP/CHS/AAU, and permission was obtained to conduct the study. Permission was also sought and obtained from clinical staff working at the clinic where patients were recruited. An informed consent process was followed during participant recruitment while privacy, confidentiality, and anonymity were maintained throughout the study conduct and report writing.

Participants’ characteristics

There were fourteen study participants who had a median age of 34 years. Among the participants, eight were males, ten were followers of Orthodox Christianity and eight had postsecondary education (Table 1). The mean number of years of living with epilepsy for males was 14 years and 16 years for females. All participants were on seizure medication, the most common of which were phenobarbital, carbamazepine, and phenytoin.

The findings of the study revealed that different terms were used to describe epilepsy in Amharic language. These include “Azurit” and “Yemitel Besheta” which literally means something that makes them fall. Five key themes emerged from the data: (i) perception about the illness; (ii) perception about the treatment; (iii) relationships with health care providers; (iv) family support; and (v) coping procedures.

Study participants cited different causes for their epilepsy including the evil spirit, heredity, starvation, fever when they were a child and problem in the brain. Furthermore, they stated different lifestyles related activities such as cigarette smoking, alcohol drinking and khat chewing and stress, frustration, as exacerbating factors for their epilepsy.

It is caused by starvation. Stress, going outside at night time and also if you fall while you are a child it can change to epilepsy. (56 years old male patient)

“There is something in my family . . . I relate it with evil spirit. My grandmother worships idol and I wonder if that caused it. Another thing that I think is . . . may be . . . when I got born they didn’t guard me from bad spirits. You know there are things where your family should protect you from you like “lekefet” were you got exposed to bad spirits” (32 years old male patient)

Most study participants mentioned symptoms were falling, absences (behavioral and mental arrest for few seconds), biting of the tongue and chewing, ‘feeling hot’, rapid blinking of the eyelids, excessive salivation and unconsciousness.

First it gives you a sign like feeling hot . . . and I feel when my blood rises. (29 years old male patient)

Almost twice, three times . . . I found myself in another person house. Without knowing it I walk myself to someone else’s home. Once I found myself near to the traffic road. (31 years old male patient)

Relative to those participants who had epilepsy from childhood, those who had it at an adult age expect to get cured. Some patients believe that the illness is lifelong but they take the medications to control their symptoms. Study participants who think their illness is caused by trauma mentioned that the illness takes longer onset from the time they experience the trauma. On the other hand, participants who described their illness as caused by evil spirits and feeling frightened reported that the illness has fast onset.

My family told me when I was a kid I saw a very scary movie that night I got frightened, disturbed and got sick right away (29 years male patient)

All most all of the study participants described epilepsy as a very severe disease. They describe it as severe especially since ‘no one’ understands what they are experiencing.

I have never seen such a difficult disease; no one will understand you because other times you look healthy. This disease doesn't kill you rather it makes your life partial (A 50 years old male patient)

For me, it is a very severe disease because . . . . Saying to someone you have kidney or heart disease is very easy relative to saying you have epilepsy. (19 years old female patient)

Study participants have reported about different emotional, social and economic consequences that they have encountered in relation to their illness. In relation to the emotional consequence, most reported experiencing depressed mode. They mentioned hating themselves and isolation from other people because of the fear of getting emotionally hurt. They mentioned that the illness makes them not to express themselves. Some respondents mentioned that they feel inferior compared to other healthy individuals.

…You hate things out of nowhere and also you hate being with other people. Even you lose your appetite I don't know if that is related to the disease or not. These feelings can happen before or after the symptom . . . . But the depression can last for a week. (32 years old male patient)

Whether you believe or not I don't have a girlfriend till now. . . . I think the disease made me not to express myself . . . . I got scared of telling people about it. I got worried . . . . What if they don't accept me as I am? (29 years old male patient)

Some also expressed that the illness negatively affected their livelihoods such as jobs and education.

I do technical works in my profession. . . .Mostly I drove a car when I moved from one place to another but nowadays I am stopping that because I am scared of the seizure while driving a car. (33 years old male patient)

I stopped my education when I was a child because I experience a seizure in a school. I wanted to continue my education but I couldn't. . . . Due to frequent attacks of seizure (31 years old female patient)

Some study participants have experienced stigma from society and express fear and would not be comfortable to reveal about their illness, be it in the workplace or at school. They expressed societal views such as not thinking they are fit for the work as any other individual and that the disease is transmittable. They hate being called sick and peoples gossiping about their illness.

The society has a bad impression about it. Even people who are assumed to be educated see you as inferior. They think you cannot perform or work as others do. (19 years old female patient)

I know this illness is very abominable in the society and also scary. I know people are scared of a person with epilepsy because they think it can be transmitted through physical contact… so basically it makes you to be detached and uncommunicative. Because I know this… I was terrified when I heard that I have epilepsy. (33 years old male patient)

Study participants believe that modern medicines are appropriate for their conditions but with different reasons. They compare the time before they start the medication to see their improvement.

The medications are very important. It decreases the frequency of the seizure and it makes you not to worry. I wouldn't be here talking to you if I wasn't taking the medications; now I have confidence in the medications (32 years old male patient)

Some patients reported experience of side effects and some are worried because they are taking medications continuously. A female patient was concerned if Phenobarbital has an effect on her unborn baby when she was pregnant and others fear if their medications have an interaction with their food and other over the counter medications. There are patients who experience erectile dysfunction, gingival hyperplasia, and allergic reaction. Some patients also reported that they experience bad breath, weight gaining and loss of appetite.

My sexual desire was reduced to zero. . . .I hadn’t had sexual pleasure since I start taking the medications… (56 years old male patient)

…Right after I start the medication I start feeling dizziness like I have been drunk (50 years old male patient, on Carbamazepine)

Some patient thinks it would cost them so much money because they will take it lifelong. Patients reported that buying generic products from the hospital has reduced their cost of medications but sometimes they encounter unavailability of the medicine form the stock. For this reason, they have to search for their medications in the entire city. Others reported that there is little access to new generation anti-epileptic medications in the country.

…It's going take its own budget . . . I got scared of having this medication for lifelong because it will have an economic impact in my life. (33 years old male patient)

All of the Christian patients said they never used traditional herbal medicine. Some of the Muslim participants for their part mentioned that they have used herbal medicine and they have seen improvement. They couldn't mention the name of the medicinal plant.

They give you something compounded with black seed, honey and things I don't know but when compared it to modern medicine it is expensive. I got relieved for some time but it didn't last long (33 years old male patient)

Almost all Christian patients however used spiritual healing concurrently with their medications or before they started modern medicine. Patients use different types of spiritual healing like praying, fasting and baptizing with holy water. Most patients think using spiritual healing combined with modern medicine have a positive treatment outcome.

… I used holy water. I sometimes take the medication with holy water because I should drink it in the morning. I think both are good for my health so I take both (19 years old female patient)

Almost all patients complain of being seen by a different physician during their follow up. When a new doctor sees them they are expected to tell their disease history all over again and again. The participants express this as something tedious and challenging. Participants also reported that they don't get enough information on the medication they are taking. They wanted to know if the medication they are taking has serious side effects, drug interaction, and other important information.

They didn’t tell me about the interaction of Phenytoin with other drugs. I had been taking many medications in the past and I got concern if that has an impact on the level of Phenytoin in my blood. (41 years old male patient)

All most all of the patients mentioned that they got support from their family. They helped them to remember their pill-taking time and to pass through emotional times. Participants mentioned that instead of worrying about things by oneself it’s better to share concerns with family and that helps them to reduce the stress.

I got support from my family for example if I had a headache I have to go to a clinic and see a doctor. They treat me better than any child in the family. (19 years old female patient)

Participants reported they have tried other alternative medicines. The most common reasons for delay in treatment-seeking behavior were thinking it is caused by an evil spirit and treating with holy water for a long time.

For a long time, I was baptized with holy water repeatedly. For that reason, I didn't start modern medicine for two years. (22 years old female patient)

Study participants also expressed that they did not adhere to the medications. Reasons that they mentioned include increased cost from time to time, being symptom-free for a longer duration and the medication side effects.

…mostly I don’t adhere to the time. When I take the medications I feel better and start to forget and other times when I get sick I take the medications appropriately for the first week until I get better. (32 years old male patient)

I stopped the drug in middle because I heard that the medication is not for life long. I thought I was completely cured. (42 years old female patient)

Being happy and getting emotionally strong are the two common reported results that participants mentioned in relieving low mood associated with the illness. Participants also mentioned was taking rest and fresh air helped them when they feel they are going to get sick. Having an active religious life is also another coping mechanism mentioned by the participants.

For me, making myself free and not stressing about things helps me. Taking rest is also very important (51 years old female patient)