Extracts from a Comment in The Lancet Child and Adolescent Health, with comments from me below.
CITATION: Symon M Kariuki et al. skariuki@kemri-wellcome.org
Epilepsy stigma in children in low-income and middle-income countries
The Lancet Child and Adolescent Health Vol 5 May 2021
https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(21)00090-0/fulltext [restricted access]
The epilepsy treatment gap is largest in children. Management of seizures is dependent upon parents, who might not access medical treatment because of stigma, costs, and misperceptions of the seizures as being benign...
The stigma associated with epilepsy takes three forms: internalised attitudes of the person (ie, felt stigma), actions of others (ie, enacted stigma), and consequences of association with those who are stigmatised (ie, courtesy or secondary stigma)... Stigma can defy human cognition and class — some health-care workers in Africa reported that they would not employ or marry a person with epilepsy...
Parents report perceived stigma because they are blamed for their child’s situation.,,
Epilepsy stigma should be addressed by joint efforts of epilepsy stakeholders, such as National Epilepsy Coordinating Committees, whose role includes awareness creation, advocacy for policy change and practice, and promotion of responsible journalism.
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Comments (NPW)
1. Stigma is closely linked with lack of information, misinformation, and distorted traditional beliefs such as 'epilepsy is infectious' and 'epilepsy is caused by witchcraft'. I invite HIFA members to share your observations on this.
2. The full text of the paper is restricted-access. I note that papers relating to low- and middle-income countries in The Lancet itself are freely available, a policy that we have applauded on HIFA. I shall look into the possibility of extending this policy to some or all Lancet journals. Of course, the flagship journal for global health - The Lancet Global Health - has always been fully open-access.
Neil Pakenham-Walsh, HIFA Coordinator, neil@hifa.org www.hifa.org
