What does the UK public understand about epilepsy? And what kind of attitudes do they have towards people with the condition? These were just some of the questions a new Epilepsy Action research study set out to answer. We wanted to shed light on stigma and understand more about people's beliefs about epilepsy in the UK. We teamed up with researchers at Bangor University to gain clear and current evidence and a deeper understanding of public attitudes towards epilepsy.
We know from many of our members that people with epilepsy report experiencing stigma, prejudice and discrimination. This can be enacted stigma, where people are treated unfairly by others. Stigma can also be ‘felt', when people's feelings of worry and expectations of discrimination stop them from talking about their experiences and seeking help. Felt stigma can be as harmful as enacted stigma as it can lead to withdrawal from society and further feelings of shame or depression. This is something Epilepsy Action needs to tackle. Through the research, we wanted to find out whether stigma is mostly felt or enacted – or both – in order to develop appropriate ways to tackle the issue. The research is also an important way for us to be able to measure the change in public attitudes towards epilepsy over time.
Around 4,000 people in the UK were asked to share their views and knowledge about epilepsy, on topics from driving and work to family life and relationships. Here are the headline findings from their responses:
Risk and safety concerns
This topic looked at attitudes towards driving and looking after children and was the one which most divided opinion. Half of people said they would not let their child ride in a car with a driver who has epilepsy. Almost half said they would feel uncomfortable if their child rode in a car with a driver with epilepsy. And just over a third of people said they would not employ someone with epilepsy to babysit their child.
Personal fear and social avoidance
Stigma was relatively low in this category. People's responses showed they would not be embarrassed if someone in their family had epilepsy. Most also said they would be happy to work with or date someone with epilepsy. However, a quarter of people said they would be afraid to be alone with someone epilepsy. And just under a quarter said they would be nervous to be around a person with epilepsy in the event of him or her having a seizure.
Work and role expectations
Stigma scored relatively low in this area too. Most respondents said they believed people with epilepsy can be as successful as others at work and can lead ‘normal' lives. However, around a quarter of people said they believe there are many work activities people with epilepsy cannot do safely that others can.
This category scored the lowest for stigma. People were asked questions such as if they thought people with epilepsy were less smart than others, or whether they shouldn't marry or have children. The results showed most people disagreed with the statements.
So what have we learned?
The research study found that the average person in the UK has a largely positive attitude towards people with epilepsy. This is encouraging in many ways, showing we have evolved into a more tolerant and accepting society towards people with disabilities.
However, the research also showed that 10 in 100 people had a negative attitude towards people with epilepsy and 1 in 100 had a very negative attitude. It is worrying to see that negative attitudes towards people with epilepsy still persist in this day and age. We need to close this gap to ensure people with epilepsy are no longer treated unfairly because of their epilepsy.
In many cases, such as driving, it's understandable why people may have more negative attitudes towards epilepsy. But this just further highlights the need for more education to show there are many ways to overcome the challenges of living with epilepsy. We know from the results that fear and lack of understanding are major drivers behind discrimination and stigmatising attitudes. This research is also important in telling us what people know or believe about epilepsy and the impact this has on people with the condition and their loved ones.
We want this research to kickstart conversations about epilepsy, to challenge myths, improve knowledge and stamp out the fear and prejudice we know still exists. There are many ways Epilepsy Action is here to change this. These include school and workplace training, and providing first aid advice so people can feel more confident in helping someone with epilepsy.
Epilepsy Action will be using the research to inform the organisation's future work. What do you think about the results of this study? Do you have a story to tell about being discriminated against or feeling stigmatised? Or do you have a positive experience to share about your epilepsy? Get in touch and let us know – email firstname.lastname@example.org
The study was carried out by Dr Emily Holmes, Siobhan Bourke and Dr Catrin Plumpton at Bangor University. It consisted of an online survey of 3,875 people. The sample of people represented the UK based on population characteristics such as age, gender, ethnicitiy and education. Read the full study findings here: www.seizure-journal.com/article/S1059-1311(18)30684-8/fulltext