Quality of life and stigma in people with epilepsy: and knowledge and stigma concerning people with epilepsy in the UK and Kurdistan, Northern Iraq.

Abstract

This project aimed to explore the lives of people with epilepsy living in the UK and Kurdistan, Northern Iraq, using qualitative and quantitative methods with a particular focus on stigma and quality of life. This study further explored others’ perceptions concerning those with epilepsy, particularly in regards to knowledge and stigma about epilepsy. Participants were all over the age of 18. The UK sample was recruited from personal contacts and Epilepsy Action conferences. The Kurdistan participants were recruited from Neurology clinics and personal contacts. Data collection consisted of snowball and convenience sampling. The first study was a qualitative investigation looking at people with epilepsy, 10 participants from the UK and 10 participants from Kurdistan were interviewed using semi-structured interviews. The interview schedule was exploratory and non-intrusive. The transcripts were analysed using thematic analysis. From the analysis five main themes were uncovered; they were (1) The Experience of Seizures; (2) Impact of Living with Epilepsy; (3) Adjustment; (4) Coping and; (5) Stigma, each with two sub-themes. The second study was a quantitative study of people with epilepsy which looked at knowledge of epilepsy, seizure severity, perceived illness seriousness, perceived stigma, depression and quality of life. The total number of participants that took part in the second study was 84 participants in the UK group and 88 in the Kurdistan group. Using Hierarchical Multiple Regression, the results showed that depression and stigma, mediated by depression, are main predictors of quality of life amongst people with epilepsy. The third study investigated people without epilepsy which looked at knowledge of epilepsy and stigma regarding people with the condition. There were 116 participants in the UK group and 200 from the Kurdistan group. Using ANCOVA, Multivariate General Linear Model and Linear Regression, the results showed that the UK participants had significantly better knowledge of epilepsy compared to the Kurdistan group; however, although stigma was higher among the Kurdish group, a significant result was not observed.