Understanding and supporting youth with epilepsy

Article submitted by: Epilepsy Action Australia

Epilepsy can be a complex condition and is more than just seizures. There are many types of epilepsy, frequently with other associated comorbidities and social issues, meaning transitioning to adult care generally isn’t straightforward. It needs to be planned and tailored to each individual to ensure continuity of care in medical and social supports.

After listening to the experiences of young people at youth conferences earlier in the year, and recognising a need in the epilepsy sector, Epilepsy Action Australia (EAA) developed several resources to help youth transition to adult healthcare services, including:

• A downloadable transition checklist. This guides the person through steps to prepare for transition to adult healthcare services and creates a personalised action plan upon completion. Youth can use this checklist on their own, or with caregivers or an epilepsy nurse.
• An online interactive quiz. This fun resource is another way to go through the checklist. It allows the person to test how ready they are to transition to adult healthcare services and provides a personalised action plan.
• Video resources from psychologists. These discuss how parents and caregivers can support the transition to adult healthcare services.
• Video experiences and tips. In this resource, young people with epilepsy who have gone through the transition to adult healthcare services share their experiences and offer some useful tips.

Healthcare professionals have given positive feedback on the resources and particularly liked the self-driven interactive quiz. They also welcomed the video resource from a parent’s perspective since it outlined how they can support their young person through this transition.

EAA hopes the resources will better prepare the young person and facilitate a positive, more collaborative and smoother transition. Engagement has been strong since the launch, with 43 checklists and 19 interactive quizzes completed and a vast majority of people noting they found the resources either 'useful' or 'very useful'.

To view the EAA resources, click here

The youth conferences organised by EAA have helped many attendees to establish new social connections and friendships from sharing similar challenges and experiences — with many meeting other people living with epilepsy for the first time.

The three conferences, held in Sydney, Newcastle, and Wagga Wagga for 16-24 years olds living with epilepsy, provided a safe platform for youth to express ideas and gain new strategies to manage their own health, mental health and self-talk. The events allowed them to walk away with new strengths and confidence.

The conferences also enabled EAA to improve the organisation’s understanding of the individual needs of young people with epilepsy. The struggles with transition to adult healthcare services frequently came up and the topic consistently emerges in exchanges with epilepsy experts, who have concerns about the lack of epilepsy-specific resources to aid in moving to adult healthcare.

The events and resources were funded under the joint Australian Government – NSW Government Disaster Funding Arrangements 2018.