Epilepsy and families

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This examines how epilepsy affects all those who live with it

Epilepsy’s impact on children, particularly in relation to learning and behaviour, is often underestimated. What can also be neglected is the knock-on impact that this complex condition can have on the wider family. Emerging research shows that parents of young children with epilepsy are more likely to suffer from anxiety or depression than parents of children with other neuro-disabilities. However, parents can benefit from targeted support and connecting with other families affected by epilepsy.

Epilepsy affects approximately one child in every primary school and five in every secondary school and can have a wide-ranging impact on young people with the condition. Research has shown that 95 per cent of children with epilepsy experience significant difficulty in at least one area of learning or behaviour (Reilly et al., 2014); 42 per cent underachieve in at least one academic area and 49 per cent of parents report difficulties with school attendance. Young people with epilepsy are also four times more likely to experience a mental health problem than their peers (Davies et al., 2003). On top of these challenges, young people with epilepsy may be faced with the ongoing risk that they could experience a seizure at any moment, which might require emergency intervention.

The wide-ranging impact of epilepsy on a young person can undoubtedly take its toll on the wider family. Parents of children with epilepsy have been found to experience higher levels of anxiety and depression (Jones and Reilly, 2016). Seizures can be a major source of concern for parents and many think that their child is dying (Besag et al., 2005).

Strain on families

Professor Helen Cross, the Prince of Wales’ Chair of Childhood Epilepsy, is leading research to examine how having a young child with epilepsy impacts on families. This population-based study is assessing whether epilepsy presents more difficulties for families than other neuro-disabilities. As part of the research, all parents of young children with epilepsy in a designated area have been asked what it is like for them to live with the condition. The study also compares behavioural and developmental issues in young children with epilepsy with those of children with other neuro-disabilities.

The final results from this study will be published next year, but preliminary findings were presented at the British Paediatric Neurology Association conference in January 2016. These show that mothers of children with epilepsy had significantly higher levels of anxiety and depression compared with mothers of children with non-epilepsy related neuro-disability. Parents were found to be frustrated with the lack of support and access to specialists, as well as long waiting lists for diagnostics such as EEG (electroencephalogram).

Parents reported that they were not being sufficiently informed about the link between epilepsy and developmental or behaviour issues. Parents said that these difficulties often had a more significant impact on child wellbeing and family functioning than seizure management. The provision of therapeutic and educational support for developmental or behavioural difficulties was found to be very patchy. Having a young child with epilepsy has a significant impact on family functioning, with parents mentioning restrictions on family activities and increased financial burdens. Those families who were able to access an epilepsy specialist nurse found their support very beneficial.

Connecting families

The emotional and social costs of living with epilepsy can be high and third sector organisations are exploring different ways to support families. With funding from the Big Lottery Fund, one project from Young Epilepsy is providing free support to families living in some of the most deprived areas of the country. 

One-to-one sessions with support workers and group events are enabling parents to share their experiences of epilepsy. Both the young people involved and their families are benefitting from the additional support.

Over the summer, for example, families took part in a high ropes course through the forest and a picnic in the park. Young people attended with their parents, grandparents, siblings and friends. Local epilepsy specialist nurses were also on hand to provide any advice or support. Both the young people and their families enjoyed spending time together talking about how epilepsy has affected them, with some making plans to meet up again.

It is still early days for this particular project, but initial findings coming through are extremely positive. Families say they have experienced a happier home environment since being part of the project. Parents are seeing an improvement in their stress levels and their ability to cope with their child’s epilepsy. Parents feel more confident to give their child a greater level of independence. The project is also having an impact on other services supporting the young people. Parents feel more able to deal with these services and they have noticed an improvement in understanding, support and empathy from the professionals supporting their children.

For one family, individual support has helped improve communication between a mother and daughter. The relationship between them was becoming more strained by the day due to a lack of compromise and understanding for each other’s wishes. Laura was wanting to go out with friends during the times when she was at high risk of having a seizure and would get frustrated with her mother being worried about the situations that she would place herself in. Support sessions enabled both Laura and her mother to air their concerns together and areas of compromise were suggested. Over time, this approach has proved successful and Laura and her mother are communicating more with one another, with compromise at the forefront of their minds. This has resulted in more freedom for Laura and more peace of mind for her mother.

Specialist support

For some young people and their families however, their epilepsy is so complex – often with significant comorbid conditions – that they need additional specialist support outside of community-based services. Residential settings can offer a holistic approach which meets the individual’s education, health and care needs. Such settings can cater for young people’s hyper complex conditions and support their families.

It is clear that families of children with epilepsy are struggling with a wide range of issues. It is vital that local areas consider the holistic needs of both the young people and those closest to them as they make crucial decisions on what the right support mechanisms are, how they should be funded and who is best placed to deliver them.

Further information

Paul Keenleyside is Director of Education at the charity Young Epilepsy. A range of free downloadable resources is available at:
youngepilepsy.org.uk

 

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