The experiences of people living with epilepsy in developing countries: a systematic review of qualitative evidence

Abstract

Background: Epilepsy is a global public health problem affecting people of all ages, sex, races, nations and social class. The majority of the 50 million people with epilepsy live in developing countries, with a prevalence rate of five to 10 people per 1000. The disease poses an enormous psychological, social and economic burden on patients. An estimated 90% of people with epilepsy in developing countries do not receive treatment due to sociocultural, economic and political factors. Current treatment interventions are limited to the clinical management of the disease and are largely driven by the healthcare provider's perspective, ignoring the experiences of people living with epilepsy (PLWE).

Objective: The aim of this review was to identify, critically appraise, extract, synthesize and present the best and most current available evidence on the experiences of PLWE in developing countries.

Review questions: • What are the experiences of PLWE regarding the causes of their condition?• What are the experiences of PLWE regarding treatment of epilepsy?• How has epilepsy shaped the social relationships of the affected persons?

Inclusion criteria: People living with epilepsy in developing countries (Africa, Asia, Eastern Europe and Latin America).The experiences of PLWE in developing countries with particular attention on the causes, treatment and its impact on their social relationships.Primary research studies with a qualitative design not limited to phenomenology, ethnography, grounded theory, ethnomethodology, phenomenography, critical theory, interpretative or feminist analysis, case study, narrative studies and action research.

Context: Qualitative studies conducted in hospitals and community settings in developing countries.

Search strategy: A three-step search strategy was used to identify published and unpublished studies in the English language from the 1990s to the present.

Methodological quality: Identified studies that met the inclusion criteria were retrieved and critically appraised by two independent reviewers prior to their inclusion using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI).

Data extraction: Data were extracted from included papers using the recommended data extraction form embedded in the JBI-QARI.

Data synthesis: Findings, where possible, were pooled using the JBI-QARI. It involved the meta-aggregation of findings to generate a set of statements that represented that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning.

Results: From the 13 studies included in the review, 113 findings were extracted to create categories. Eight categories were created from which three synthesized findings were produced. The synthesized findings were: SYNTHESIZED FINDING 1: People living with epilepsy believed that the disease was caused by factors such as fever, demonic power, beatings, witchcraft, curses and God. Patients also had differing views as to whether the disease was contagious or hereditary. They indicated that the disease manifested as seizures, triggered by fever, stress, depression and anger. SYNTHESIZED FINDING 2: People living with epilepsy used biomedical and traditional methods to treat epilepsy and also developed strategies for coping with the disease beyond seeking treatment. SYNTHESIZED FINDING 3: People living with epilepsy had negative and positive experiences in their social relationships. The negative experiences were linked to the social, psychological and economic burden of the disease on patients, whereas the social support they got from friends, peers, family and community members were the positive aspects.

Conclusion: People living with epilepsy attribute the cause of the disease to agents like fever, demonic power and witchcraft. Patients use biomedical and traditional methods to treat the disease and have also developed various coping strategies (like prayers and concealment) alongside treatment. Epilepsy has negative effects on the social relationships of patients and is a social, psychological and economic burden for patients. However, there are some positive effects like the social support they receive from family members, friends and the community.