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Plugging epilepsy knowledge gaps in Cameroon
In Context
Plugging epilepsy knowledge gaps in Cameroon Epilepsy is extraordinarily common in Cameroon. Filling the gaps in our scientific knowledge might reduce its prevalence, but improving the lives of those with the disorder rests on dispelling erroneous beliefs widely held among the general population. Adrian Burton investigates. For more on epilepsy in Cameroon see Seizure 2013; 22: 283–86 For more on the prevalence of epilepsy in Cameroon see Epilepsy Res 2008; 82: 200–10 For more on risk factors associated with epilepsy see Afr J Neurol Sci 2007; 26: 18–26 For more on the general populations’s awareness of epilepsy in Cameroon see Epilepsy Behav 2009; 15: 179–185 For more on knowledge, attitudes, and practices with respect to epilepsy among trainee health-care professionals in Cameroon see Epilepsy Behav 2010; 17: 381–88 For the study of public awareness about epilepsy in rural Cameroon see Pan Afr Med J 2013; 14: 32 For the study of secondary school students’ knowledge of epilepsy see Epilepsia 2008; 50: 1262–65 For more on the Cameroon Epilepsy Foundation see https://www.facebook.com/ cameroonepilepsyfoundation To see the movie by Takong Delvis and Enah Johnscott see https://www.youtube.com/ watch?v=OBhkxKnTLko
980
The prevalence of epilepsy in Cameroon might be the highest in the world. Figures of between 4·9% and 6% are commonly quoted, although values of over 10% have been reported for some areas. No one is entirely sure why epilepsy is so common here, although a complex interplay between genetic and other factors, including a range of parasitic diseases (particularly tapeworm infection and onchocerciasis [river blindness]), seems to be at work. Plugging the gap in our scientific knowledge regarding which aetiological factors are operating where is essential to any programme designed to reduce the burden of disease. But it is not the only need. Cameroonian doctors, researchers, non-governmental organisations, and film makers have been trying hard to point out that erroneous beliefs regarding epilepsy, held not just by the general population but sometimes even by trainee healthcare professionals, are perpetuating the stigmatisation of those affected and hindering their care. Plugging this gap in the public’s knowledge of the disease is no less important in making change possible. In 2001, epilepsy was officially recognised as a public health problem by Cameroon’s Ministry of Public Health, and in 2006, the National Epilepsy Control Program (NECP) was launched by the Department of Disease Control. Under its mandate, researchers have been hard at work harvesting baseline knowledge on what people believe about epilepsy— information crucial to the design of education programmes tailored to the needs of the country’s different population groups. Demons, curses, and witchcraft are commonly thought to be the cause of epilepsy in Cameroon. A study
of 505 adults among the general population placed witchcraft at the top of the list, with 13% of Muslims and up to 23% of Christians citing it as its origin. A similar study involving 920 secondary school pupils found 26% of the children to believe the same. “Indeed, many studies carried out in various sociocultural representations of the country have identified witchcraft as a key erroneous cause of the disease”, explains Luchuo Engelbert Bain of the Centre for Population Studies and Health Promotion (Yaounde, Cameroon). “Many people therefore miss the opportunity to be properly managed. It is important for epilepsy to be transformed from a spiritual condition due to witchcraft into a medical condition that is most times easily treatable.” The same studies also reported 65% of the adult group and 50% of the pupils to believe the disease to be contagious. The methods of transmission cited included waste gas (39% and 15%), saliva (34% and 55%), blood (10% and 36%), and sexual intercourse (10% and 15%). The variation in these figures suggests that different educational strategies might be needed to redress the misconceptions held by these different population groups. Other strategies still might be needed to tackle shortcomings in the knowledge of health-care workers: one study reported that 10% of a group of 340 trainee nurses and laboratory assistants believed epilepsy to be contagious. Fear of becoming infected helps fuel the social isolation of those with epilepsy. In a study by Alfred Kongnyu Njamnshi, Vice Dean of the Faculty of Medicine & Biomedical Sciences,
Yaounde University, on the beliefs of 387 people living in 12 villages aged 15 years and older and who did not have epilepsy, more than half objected to associating with people with the disorder. Sadly, this is not at all an uncommon finding. Indeed, more than 60% of people are regularly reported to be against their children marrying someone with epilepsy, and a similar percentage might not offer them equal work opportunities. Takong Delvis, a Cameroonian film maker and founder of the Cameroon Epilepsy Foundation has been trying to battle these problems with the tools of his trade. In a short but poignant film made together with Enah Johnscott, Delvis highlights how these erroneous beliefs leave those with epilepsy isolated from schools, friends, and the chance to work— and he leaves the viewer in no doubt of how hard it is to make headway against such entrenched ideas. Tamara Bugembe, a Ugandan national, now a consultant paediatrician at Princess Royal University Hospital in Orpington, UK, learned this for herself when she spent time in Cameroon exploring approaches to community education on epilepsy. “I worked alongside Delvis in 2013”, she explains. “We tried to show his film at secondary schools to start the conversation about epilepsy, approaching over 15 of them, but only two gave us permission because the school heads did not want word to get out that they thought it was acceptable to associate with people with epilepsy.” Bugembe also approached churches— the first port of call for many people who believe epilepsy to be a spiritual illness. “Only one pastor was willing for us to meet with his congregation and talk about epilepsy and address
www.thelancet.com/neurology Vol 14 October 2015
the stigma surrounding it”, she recalls. “And despite him announcing it to his flock of over 100 members, only three turned up—all parents of children with epilepsy.” Although cheap drugs that could help those with epilepsy are available in Cameroon, such reticence to even talk about the disorder means many people never get the care they need. This treatment gap, however, is not Cameroon’s problem alone. “It takes the average person with epilepsy in Sierra Leone 6·5 years to seek medical attention after their first seizure”, says Durodami Radcliffe Lisk, a consultant neurologist at the College of Medicine and Allied Health Sciences, University of Sierra Leone (Freetown, Sierra Leone). Against this background, Lisk, who produced a handbook for health workers to aid them in addressing the erroneous beliefs in his country, underscores the need for insistence with understandable messaging if such barriers are to be broken down. “We concentrate on getting the community to understand the causes and mechanism of epilepsy, [and via this] change attitudes. One simple analogy we use is to relate epilepsy to our unreliable and inconsistent electricity grid. Voltage fluctuations are common and equipment is damaged by this. Everyone knows and understands this. We therefore liken the brain to electrical equipment run on a stable electrical supply. If the voltage is suddenly increased, then the brain malfunctions and produces a seizure. We have in fact made a 3 min video in the local language [of the target area] expanding on this, which has been very successful. Once this is understood, it is easier to explain why epilepsy is not contagious and not caused by demons. It categorically identifies epilepsy as a medical or technical problem, making it easier to challenge the multiple myths around the disease in Sierra Leone.” Back in Cameroon, the Gabriel Bebonbechem Foundation for www.thelancet.com/neurology Vol 14 October 2015
Epilepsy and Mental Wellbeing (Gbm, Douala, Cameroon) has recently announced publication of its own handbook in October, 2015, this time for teachers. Produced with the help of Cyrille Nkouonlack, Government Neurologist for the South West Region of Cameroon, it aims to tackle the misunderstandings surrounding epilepsy in schools. “An epileptic seizure in school can be a very stressful and stigmatising event in the life of a child”, explains Marie Abanga, Country Director for Gbm. “Most often, children with epilepsy are treated unfairly because their teachers and the school community do not know how to handle seizures or have other misconceptions about the disease. This can have a significant negative impact on the performance of the child. Teachers need to be informed and educated about epilepsy in order to prevent misunderstandings. Our handbook will provide valuable information, which will help dispel false beliefs and fight stigma. Teachers will learn useful facts on how to recognise seizures, first aid measures, and how to help children with epilepsy at school.” “We have also started sensitisation campaigns on epilepsy using the print media, community radio in English, pidgin and local languages, and national radio”, explains Bibiana Taku, Programme Director of Gbm. “We have undertaken four such campaigns and [have others] planned.” Importantly, Gbm has enjoyed collaboration with schools, churches, government social services, and traditional rulers in its project area and the greater region. But what of official, government-led programmes at the local, regional, or national level born out of the National Epilepsy Control Program? Although The Lancet Neurology made many attempts to contact the pertinent public health officers for information, they were unavailable for comment. Bain insists, however, that “it is urgent for public health actors in Cameroon to accord the importance to epilepsy that
The Gabriel Bebonecheme Foundation for Epilepsy and Mental Wellbeing
In Context
Bibiana Taku with 3-year-old Gabriel, whose treatment is provided by the Gbm
it deserves. Sadly, efforts to educate the public have either been inexistent, inadequate, or poorly tailored. Targeted health promotion and education programmes are urgent needs if behavioural change towards those affected is to occur”. One of the target groups he suggests is traditional healers. This might sound odd to some readers, but it makes perfect sense in Cameroon. “Over 50% of Cameroonians will seek care from a traditional doctor when they fall sick”, explains Bain. “Traditional doctors could therefore become key players in the fight against epilepsy; through their education they could become key points of entry in the health promotion process and in the enhancement of trusting relationships between healthcare staff and patients.” Research suggests he might be right. One study has already shown that 62% of a group of 102 traditional healers understood they could offer no treatment for epilepsy. Furthermore, 95% of the healers said they would readily refer patients to a hospital, and 75% believed the disorder was treatable with modern medicine. This last belief confirms a better future for Cameroon’s citizens with epilepsy is possible. As the country’s different stakeholders strive against the odds to bring about change, that belief must surely give them faith in their eventual success.
For the Gbm Foundation see http://www.gbm-em.org/ For more on the beliefs and attitudes of traditional healers relating to epilepsy see Epilepsy Behav 2010; 17: 95–102
Adrian Burton 981
Plugging epilepsy knowledge gaps in Cameroon Epilepsy is extraordinarily common in Cameroon. Filling the gaps in our scientific knowledge might reduce its prevalence, but improving the lives of those with the disorder rests on dispelling erroneous beliefs widely held among the general population. Adrian Burton investigates. For more on epilepsy in Cameroon see Seizure 2013; 22: 283–86 For more on the prevalence of epilepsy in Cameroon see Epilepsy Res 2008; 82: 200–10 For more on risk factors associated with epilepsy see Afr J Neurol Sci 2007; 26: 18–26 For more on the general populations’s awareness of epilepsy in Cameroon see Epilepsy Behav 2009; 15: 179–185 For more on knowledge, attitudes, and practices with respect to epilepsy among trainee health-care professionals in Cameroon see Epilepsy Behav 2010; 17: 381–88 For the study of public awareness about epilepsy in rural Cameroon see Pan Afr Med J 2013; 14: 32 For the study of secondary school students’ knowledge of epilepsy see Epilepsia 2008; 50: 1262–65 For more on the Cameroon Epilepsy Foundation see https://www.facebook.com/ cameroonepilepsyfoundation To see the movie by Takong Delvis and Enah Johnscott see https://www.youtube.com/ watch?v=OBhkxKnTLko
980
The prevalence of epilepsy in Cameroon might be the highest in the world. Figures of between 4·9% and 6% are commonly quoted, although values of over 10% have been reported for some areas. No one is entirely sure why epilepsy is so common here, although a complex interplay between genetic and other factors, including a range of parasitic diseases (particularly tapeworm infection and onchocerciasis [river blindness]), seems to be at work. Plugging the gap in our scientific knowledge regarding which aetiological factors are operating where is essential to any programme designed to reduce the burden of disease. But it is not the only need. Cameroonian doctors, researchers, non-governmental organisations, and film makers have been trying hard to point out that erroneous beliefs regarding epilepsy, held not just by the general population but sometimes even by trainee healthcare professionals, are perpetuating the stigmatisation of those affected and hindering their care. Plugging this gap in the public’s knowledge of the disease is no less important in making change possible. In 2001, epilepsy was officially recognised as a public health problem by Cameroon’s Ministry of Public Health, and in 2006, the National Epilepsy Control Program (NECP) was launched by the Department of Disease Control. Under its mandate, researchers have been hard at work harvesting baseline knowledge on what people believe about epilepsy— information crucial to the design of education programmes tailored to the needs of the country’s different population groups. Demons, curses, and witchcraft are commonly thought to be the cause of epilepsy in Cameroon. A study
of 505 adults among the general population placed witchcraft at the top of the list, with 13% of Muslims and up to 23% of Christians citing it as its origin. A similar study involving 920 secondary school pupils found 26% of the children to believe the same. “Indeed, many studies carried out in various sociocultural representations of the country have identified witchcraft as a key erroneous cause of the disease”, explains Luchuo Engelbert Bain of the Centre for Population Studies and Health Promotion (Yaounde, Cameroon). “Many people therefore miss the opportunity to be properly managed. It is important for epilepsy to be transformed from a spiritual condition due to witchcraft into a medical condition that is most times easily treatable.” The same studies also reported 65% of the adult group and 50% of the pupils to believe the disease to be contagious. The methods of transmission cited included waste gas (39% and 15%), saliva (34% and 55%), blood (10% and 36%), and sexual intercourse (10% and 15%). The variation in these figures suggests that different educational strategies might be needed to redress the misconceptions held by these different population groups. Other strategies still might be needed to tackle shortcomings in the knowledge of health-care workers: one study reported that 10% of a group of 340 trainee nurses and laboratory assistants believed epilepsy to be contagious. Fear of becoming infected helps fuel the social isolation of those with epilepsy. In a study by Alfred Kongnyu Njamnshi, Vice Dean of the Faculty of Medicine & Biomedical Sciences,
Yaounde University, on the beliefs of 387 people living in 12 villages aged 15 years and older and who did not have epilepsy, more than half objected to associating with people with the disorder. Sadly, this is not at all an uncommon finding. Indeed, more than 60% of people are regularly reported to be against their children marrying someone with epilepsy, and a similar percentage might not offer them equal work opportunities. Takong Delvis, a Cameroonian film maker and founder of the Cameroon Epilepsy Foundation has been trying to battle these problems with the tools of his trade. In a short but poignant film made together with Enah Johnscott, Delvis highlights how these erroneous beliefs leave those with epilepsy isolated from schools, friends, and the chance to work— and he leaves the viewer in no doubt of how hard it is to make headway against such entrenched ideas. Tamara Bugembe, a Ugandan national, now a consultant paediatrician at Princess Royal University Hospital in Orpington, UK, learned this for herself when she spent time in Cameroon exploring approaches to community education on epilepsy. “I worked alongside Delvis in 2013”, she explains. “We tried to show his film at secondary schools to start the conversation about epilepsy, approaching over 15 of them, but only two gave us permission because the school heads did not want word to get out that they thought it was acceptable to associate with people with epilepsy.” Bugembe also approached churches— the first port of call for many people who believe epilepsy to be a spiritual illness. “Only one pastor was willing for us to meet with his congregation and talk about epilepsy and address
www.thelancet.com/neurology Vol 14 October 2015
the stigma surrounding it”, she recalls. “And despite him announcing it to his flock of over 100 members, only three turned up—all parents of children with epilepsy.” Although cheap drugs that could help those with epilepsy are available in Cameroon, such reticence to even talk about the disorder means many people never get the care they need. This treatment gap, however, is not Cameroon’s problem alone. “It takes the average person with epilepsy in Sierra Leone 6·5 years to seek medical attention after their first seizure”, says Durodami Radcliffe Lisk, a consultant neurologist at the College of Medicine and Allied Health Sciences, University of Sierra Leone (Freetown, Sierra Leone). Against this background, Lisk, who produced a handbook for health workers to aid them in addressing the erroneous beliefs in his country, underscores the need for insistence with understandable messaging if such barriers are to be broken down. “We concentrate on getting the community to understand the causes and mechanism of epilepsy, [and via this] change attitudes. One simple analogy we use is to relate epilepsy to our unreliable and inconsistent electricity grid. Voltage fluctuations are common and equipment is damaged by this. Everyone knows and understands this. We therefore liken the brain to electrical equipment run on a stable electrical supply. If the voltage is suddenly increased, then the brain malfunctions and produces a seizure. We have in fact made a 3 min video in the local language [of the target area] expanding on this, which has been very successful. Once this is understood, it is easier to explain why epilepsy is not contagious and not caused by demons. It categorically identifies epilepsy as a medical or technical problem, making it easier to challenge the multiple myths around the disease in Sierra Leone.” Back in Cameroon, the Gabriel Bebonbechem Foundation for www.thelancet.com/neurology Vol 14 October 2015
Epilepsy and Mental Wellbeing (Gbm, Douala, Cameroon) has recently announced publication of its own handbook in October, 2015, this time for teachers. Produced with the help of Cyrille Nkouonlack, Government Neurologist for the South West Region of Cameroon, it aims to tackle the misunderstandings surrounding epilepsy in schools. “An epileptic seizure in school can be a very stressful and stigmatising event in the life of a child”, explains Marie Abanga, Country Director for Gbm. “Most often, children with epilepsy are treated unfairly because their teachers and the school community do not know how to handle seizures or have other misconceptions about the disease. This can have a significant negative impact on the performance of the child. Teachers need to be informed and educated about epilepsy in order to prevent misunderstandings. Our handbook will provide valuable information, which will help dispel false beliefs and fight stigma. Teachers will learn useful facts on how to recognise seizures, first aid measures, and how to help children with epilepsy at school.” “We have also started sensitisation campaigns on epilepsy using the print media, community radio in English, pidgin and local languages, and national radio”, explains Bibiana Taku, Programme Director of Gbm. “We have undertaken four such campaigns and [have others] planned.” Importantly, Gbm has enjoyed collaboration with schools, churches, government social services, and traditional rulers in its project area and the greater region. But what of official, government-led programmes at the local, regional, or national level born out of the National Epilepsy Control Program? Although The Lancet Neurology made many attempts to contact the pertinent public health officers for information, they were unavailable for comment. Bain insists, however, that “it is urgent for public health actors in Cameroon to accord the importance to epilepsy that
The Gabriel Bebonecheme Foundation for Epilepsy and Mental Wellbeing
In Context
Bibiana Taku with 3-year-old Gabriel, whose treatment is provided by the Gbm
it deserves. Sadly, efforts to educate the public have either been inexistent, inadequate, or poorly tailored. Targeted health promotion and education programmes are urgent needs if behavioural change towards those affected is to occur”. One of the target groups he suggests is traditional healers. This might sound odd to some readers, but it makes perfect sense in Cameroon. “Over 50% of Cameroonians will seek care from a traditional doctor when they fall sick”, explains Bain. “Traditional doctors could therefore become key players in the fight against epilepsy; through their education they could become key points of entry in the health promotion process and in the enhancement of trusting relationships between healthcare staff and patients.” Research suggests he might be right. One study has already shown that 62% of a group of 102 traditional healers understood they could offer no treatment for epilepsy. Furthermore, 95% of the healers said they would readily refer patients to a hospital, and 75% believed the disorder was treatable with modern medicine. This last belief confirms a better future for Cameroon’s citizens with epilepsy is possible. As the country’s different stakeholders strive against the odds to bring about change, that belief must surely give them faith in their eventual success.
For the Gbm Foundation see http://www.gbm-em.org/ For more on the beliefs and attitudes of traditional healers relating to epilepsy see Epilepsy Behav 2010; 17: 95–102
Adrian Burton 981