Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa, a systematic review.

4 August, 2018

Dear HIFA colleagues,

Epilepsy misconceptions, stigmatizing cultural beliefs, and perceptions are widely prevalent in subSaharan Africa, according to a new systematic review. This review confirms what we have previously discussed, namely that misinformation, myths and misconceptions about epilepsy (and indeed many other diseases) are a major barrier to the right to health (and education) of those affected. That's denial of rights to some 10 million people in Africa alone.

CITATION: Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa, a systematic review.

Kaddumukasa M, Kaddumukasa MN, Buwembo W, Munabi IG, Blixen C, Lhatoo S, Sewankambo N, Katabira E, Sajatovic M.

Epileps and Behaviour 2018

DOI: https://doi.org/10.1016/j.yebeh.2018.04.014

Abstract

OBJECTIVE: This systematic review identified papers that described epilepsy misconceptions or stigma in sub-Saharan Africa (SSA) and research interventions focused on reducing these misconceptions.

MATERIALS AND METHODS: Publications in the English language from January 2000 to October 2017 that described original research conducted in SSA on misconceptions about epilepsy were utilized.

RESULTS: Twenty-three publications were identified. Studies were from Nigeria (N = 4), Cameroon (N = 4), Uganda (N = 3), Zambia (N = 2), Ethiopia (N = 2), Tanzania (N = 2), Kenya (N = 2), Ghana, Zimbabwe, Benin, and Mali (N = 1 each). The studies included assessments of misconceptions among healthcare providers and medical students (N = 3), high school students (N = 2), teachers (N = 2), the general public (N = 10), people with epilepsy (N = 7), and traditional healers (N = 1). Only two studies had stigma-focused interventions. Majority of the studies reported limitations to socialization with people with epilepsy and various beliefs associated with epilepsy.

CONCLUSIONS: Epilepsy misconceptions, stigmatizing cultural beliefs, and perceptions were widely prevalent in SSA, and there are a few studies targeting epilepsy stigma. Existing stigma-reduction educational approaches may be impractical for general population implementation. Scalable approaches to reduce stigma are urgently needed within SSA.

Here are some of the beliefs:

People with epilepsy have insanity.

Objection to employment of people with epilepsy

Prefer people with epilepsy to be in separate classes/schools.

People with epilepsy cannot participate in sports.

Epilepsy is caused by witchcraft

Epilepsy is due to demonic possession/evil spirit.

Epilepsy is a psychiatric disorder.

Epilepsy is transmitted by saliva.

Epilepsy is a blood disease (people with epilepsy have weak blood).

Epilepsy should be treated by traditional healers

People with epilepsy should not play with normal people.

People with epilepsy can transmit disease (i.e., epilepsy is contagious).

Here are common beliefs on how to manage seizures:

Smell the smoke of a struck match.

Pour water on face of the subject.

Sprinkle with olive oil

Place a spoon between the teeth

Give sweets during a seizure.

'One cross-sectional study with face-to-face interviews on knowledge, perceptions, and practice among 102 traditional healers was conducted in Cameroon [21]. The majority of the traditional healers in this study had heard about epilepsy and had witnessed seizures. However, 40% would object their children to associate with people with epilepsy, as 46.1% would object their children from marrying people with epilepsy. About 51% linked epilepsy disease to insanity. Though 61.8% could not offer any treatment for epilepsy, majority were willing to refer people with epilepsy to the hospital for treatment. However, over two-thirds of the traditional healers would carry out a dangerous action like placing a spoon/cloth in the mouth, tying a person down, putting the head in a toilet hole, or forcing medicines down the throat [21].'

Comment: Referring to our previous discussion about the effectiveness of tradtional medicine (TM), clearly epilepsy is not one of the diseases that can be treated better by traditional healers than by western medicine. Are there any diseases that traditional healers can treat better than modern medicine? Does TM cause more good than harm, or vice versa?

Best wishes, Neil

Coordinator, HIFA Project on Information for Citizens, Parents and Children:

http://www.hifa.org/projects/citizens-parents-and-children

Let's build a future where people are no longer dying for lack of healthcare information - Join HIFA: www.hifa.org

HIFA profile: Neil Pakenham-Walsh is coordinator of the HIFA global health campaign (Healthcare Information For All - www.hifa.org ), a global community with more than 18,000 members in 177 countries, interacting on five global forums in three languages. He also currently chairs the Dgroups Foundation (www.dgroups.info), which supports 800 communities of practice on international development, health and social justice. Twitter: @hifa_org FB: facebook.com/HIFAdotORG neil@hifa.org