Assessment of knowledge and coping modes (strategies) of parents/ other primary care providers of children with epilepsy, Addis Ababa - Ethiopia (2017)

Theoretical Background and research questions/hypothesis:

Childhood epilepsy often affects parents; panic, excessive worry about its unpredictability, parental sleeplessness and stigma, anxiety and depression are commonly encountered by parents of these affected children. Epilepsy is commonly misconceived as a mental illness; others think it is a contagious disease. It is common to put a foreign body into the mouth to prevent tongue bite, yet such practice risks aspiration, teeth fractures and airway obstruction. Nevertheless, this study is limited to assessment of parental knowledge and common misconceptions about epilepsy affecting their children, and coping modalities they used.

We hypothesized there are various misconceptions about epilepsy among among parents or other primary care providers of children affected with childhood epilepsy and the coping modes have different pattern from other societies.

Methods: The study was conducted from September 1^st, 2016 to November 30^th, 2016 through a cross sectional interview of parents/ primary care providers of children with epilepsy during their outpatient visits and data about the child’s conditions included by reviewing medical records and/ child evaluations using a tool synthesized based on previous work in African, Asian and Western setup with customization to level of clinical services being delivered. It was pretested and modified. Validity was maintained through daily supervision by principal investigator. Data was cleaned and entered into SPSS 20.0 and a p- value of 0.05 was used for statistical significance.

Results: A total of 199 primary care providers with a mean age of 36.3 years were included; of these 114 (57.3 %) were mothers, 63 (31.7 %) fathers. Most (61.3 %) had heard about epilepsy. But more than half (60.7 %) did not know right name of epilepsy. Of the respondents, nearly half (46.2 %) perceived active plays by children would provoke seizures. One hundred sixty one (81.9 %) of parents thought every seizure results in loss of a number of nerve cells in the brain. Most (82.4 %) knew epilepsy can be cured and around one third (32.2 %) knew there are non-medical treatments of epilepsy. The majority (85.4 %) knew that children with uncontrolled epilepsy should be supervised during swimming. There also realized in most cases doctors can control epileptic seizures with medication (86 %). During active seizures, 122 (61.3 %) would put an object into mouth to protect tongue from swallowing. Parents/ primary care providers used spiritual supports followed by re framing as most frequent modes of coping.

Conclusions: It was widely perceived that all seizures cause loss of consciousness and neuronal cell loss. Nearly half of candidates thought active plays by children might provoke seizures. The practice of inserting an object into a seizing child was high.

Implications for research and/or practice: Focused epilepsy education to parents of children with epilepsy on causes and mechanisms of epilepsy, safe practices during seizure and better coverage of the topic on media and school health are recommended. Incorporation of spiritual support in chronic epilepsy care is also recommended.