An Exploration of Knowledge of People with Epilepsy: A Support Group Population Study
By Emeka Okakpu and Gloria Kirwan, School of Social Work and Social Policy, Trinity College Dublin

In 2013, the authors conducted a study to identifying the factors associated with knowledge of epilepsy among a sample group of people with epilepsy who are in contact with Epilepsy Ireland. The study undertaken as part of a Master's degree in Applied Social Research in Trinity College, gathered responses from 97 people to an online survey and followed this up with a further 6 in-depth interviews. The findings are outlined below and highlight the need for the provision of improved accurate information through targeted awareness campaigns and structural educational interventions.

Background

People with epilepsy (PWE) have been found in many studies to lack knowledge about their condition. Misconceptions of epilepsy emanating from the deficit in knowledge have over the years impacted on what is known about epilepsy. Knowledge of epilepsy has been linked to improved management of seizures.

Results

In this study, people with epilepsy were found to be reasonably knowledgeable about epilepsy. The legal issue of driving was an exception. Misconceptions about epilepsy were still held by some participants, although the number of people with misconceptions was found to be lower when compared with previous other studies.

Knowledge of Epilepsy

The main findings included the following:

• Nearly a quarter (23.7%) of respondents believed that every seizure destroys a number of nerve cells in the brain and a minority of the participants (8.2%) believed that an epileptic seizure always results in the loss of consciousness. 
• A small number of the participants (14.4%) believed that all people with epilepsy should avoid flashing or strobing lights due to photosensitivity.
• Nearly a quarter of the people surveyed (24.7%) believed that people with epilepsy whose seizures are controlled for some months can reduce the dose of their antiepileptic medication.
• One-third of those who participated (33%) felt that people with epilepsy do not need to be supervised when swimming.
• Only a small minority of participants (2.1%) still held the belief that epilepsy is a symptom of mental illness.
• Over half of those surveyed did not believe that people whose seizures only happen during the night may hold a driver's license.
• Over a third of the participants (38.5%) believed that all people with seizure should avoid working with open machinery.
• Nearly a third of the participants (31.2%) believed that people with epilepsy should always disclose their epilepsy condition when applying for a job.
• Only a minority (1%) of the participants believed that people with epilepsy cannot take an active part in sports.
• Only a small number of the participants (15.6%) did not know that blood samples can be used to measure the concentration of antiepileptic medication in the blood, while nearly every participant (97.9%) knew that people with epilepsy should not take an additional dose of antiepileptic medication if they expect a seizure.
• 22.1% believed that people with epilepsy should avoid strenuous work because this can provoke seizure
• 16.5% of participants believed that an Electroencephalography (EEG) can always prove the diagnosis of epilepsy.

 Factors associated with knowledge about epilepsy

One of the key findings of this study is that level of education was found to be related with the knowledge of epilepsy. The longer people with epilepsy stay in education, the more likely they are to be knowledgeable about their condition. There was no significant relationship found between having access to an Epilepsy Specialist Nurse (ESN) and knowledge of epilepsy. This may imply that people with epilepsy who have stayed longer in education would not rely substantially on the ESN for the provision of information about their epilepsy, probably because they can access information and accumulate knowledge on their own. These findings have highlighted that service provisions for people with epilepsy might be better delivered when PWE are treated as a heterogeneous (varied) group.

Legal issues of driving and employment

Thematic analysis in this study strongly indicates that people with epilepsy demonstrated uncertainty and lack of knowledge in relation to how epilepsy affects their driving. It has also highlighted the impact of living with epilepsy. Difficulties associated with driving; including understanding how having epilepsy and seizures impact on driving and discernible frustrations that go with the restrictions in terms of employment opportunities/ lifestyle were prominently expressed in the accounts of people who were diagnosed with epilepsy as adults.

With regards to epilepsy misconceptions, analysis showed various elements which may contribute to and sustain misconceptions of epilepsy. Uncertainty about the reliability of different sources of information, mixed messages from health professionals, cultural attitudes towards information seeking, and lack of/insufficient provision of information were found to play varying roles in perpetuating misconceptions about epilepsy.

Key Findings and Recommendations

Adequate knowledge of epilepsy is important for PWE insofar as successfully coping with epilepsy relies largely on self-management practices. Therefore, encouraging people with epilepsy to stay longer in education can be valuable in accumulating accurate information needed to appropriately manage their condition. There is need for the provision of improved accurate information through targeted awareness campaigns and structural educational interventions.

Given the association between level of education and knowledge of epilepsy found in this study, service provision for people with epilepsy might be better delivered when PWE are treated as a heterogeneous group.

_{Okakpu, E. (2013) Factors Associated with Knowledge and Exploration of Knowledge of People with Epilepsy: A Support Group Population Study. Unpublished thesis submitted in respect of the Msc. In Applied Social Research, Trinity College, Dublin}

Knowledge of Epilepsy: A comparison

The table below compares responses to the same true/false questions posed in three different surveys since 2010, including the study reported above. Participants knowledge of epilepsy was substantially greater in the latter two studies, both of which included only people in direct contact with Epilepsy Ireland.