Abstracts

Rationale: Often caregivers and children with epilepsy want contact, connection and support from other families who have experienced living with epilepsy. These desires are often expressed to healthcare professionals. As healthcare providers, we often become the resource for medical information and as well the psychosocial support for families who are trying to live with epilepsy. Our local epilepsy association experiences a low membership and demand for services from the pediatric population. This is a common phenomenon amongst community epilepsy organizations. This has led us to question what families need from a community epilepsy organization and why they do not seek out this resource. Methods: The Edmonton Epilepsy Association and the Stollery Childrens Hospital developed a needs survey that was distributed to all caregivers of children with epilepsy seen in the pediatric outpatient clinic and the emergency room over a 4 month period. The survey was completed at a tertiary care pediatric center in the epilepsy clinic and pediatric emergency room. Results: The survey addressed these areas; desire for community epilepsy services for caregivers and children, the type of service required, the location of service provision, the frequency needed, any perceived barriers to accessing this service and whether families had ever utilized this type of resource in the past. The results of the survey helped us to better understand the needs and desires of caregivers and children living with epilepsy required from a community agency Conclusions: The survey information is helpful in planning community services for caregivers and children living with epilepsy. Our data is beneficial to assist us to better understand and overcome the barriers families face in accessing these services. The collaboration between the Stollery Childrens Hospital and the Edmonton Epilepsy Association will continue in order to provide the best service possible to caregivers and children with epilepsy.