Epilepsy Family Support Group
Abstract number :
1.407
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2018
Submission ID :
502476
Source :
www.aesnet.org
Presentation date :
12/1/2018 6:00:00 PM
Published date :
Nov 5, 2018, 18:00 PM
Authors :
Carrin Brandt, Children's National Medical Center; William D. Gaillard, Children’s National Medical Center; Kaitlyn Tiplady, Children's National Medical Center; Maria T. Acosta, Children's National Medical Center; Levin Suzanne, Children's National
Rationale: To evaluate usefulness of a parent support group designed to provide patients and families with information related to understanding the broad impact of epilepsy and navigating the epilepsy care process. Methods: Families of patients with epilepsy from Children’s National Health Systems were invited to participate in the “Haywire Epilepsy Support Group” during their child’s routine epilepsy clinic appointment. The patients were also invited to participate where children interact with other children, play games, and learn more about epilepsy. A 13 question baseline survey was filled out by caregivers before the group started; a repeat survey is planned at 8 months follow-up to assess the efficacy and usefulness of the support group. The baseline questions asked families about their current stress level while taking care of their child with epilepsy, whether or not they felt anxious, or if they worried their child may hurt themselves while having a seizure. Results: 7 surveys were completed by caregivers. Connecting with other families: 100% of participants said they are interested in participating in the support group because they want to connect with other families affected by epilepsy. 71% said they are looking forward to their child participating in a social educational peer group. 86% said the support group should address topics such as dealing with difficult to control seizures and 71% said they would like to know more about dealing with behavior and development issues. 71% of caregivers would also like the group to include emotional support and opportunities to network with other parents. Worrying about seizures: 86% said they are worried their child may have a seizure and injure themselves. 71% said they are stressed and overwhelmed by all the things pertaining to providing epilepsy care for their child. 100% said connecting with other families and parents of children with epilepsy is helpful. Conclusions: Preliminary baseline data obtained from this research supports our hypothesis that a family support group is desired and needed by families. Follow up assessments are planned as are evaluations of barriers to group access Funding: Internal Department Funds