New Logo

 

OUR MISSION

"The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives."

 

Experiences and Needs of Parents of Young Children with Active Epilepsy: A Population Based Study

The impact of epilepsy will vary for each child and each family. An early diagnosis of epilepsy can bring extra needs and challenges that impact the wellbeing of a child. Difficulties in children with epilepsy may include frequent seizure activity, developmental and behavioral issues, sleep disorders and cognitive impairments. Anxiety, depression, poor sleep, and increased fatigue can also occur in parents caring for young children with epilepsy. Combined, these challenges can significantly affect the way families function from day to day. Identifying needs, providing early treatment and ensuring a strong network of support for children and families facing these hurdles is critical to improving health outcomes and quality of life.

Purpose

The purpose of this study was to better understand the experiences and needs of parents with young children diagnosed with “active” epilepsy. For this study, a child was felt to have “active” epilepsy if they had a seizure sometime in the past year, or if the child was taking anti-seizure medication.

Description of Study

40 families participated in the study

Parents of young children (ages 1 to 7) with active epilepsy were interviewed in person or over the telephone by a research psychologist:

--In the case of 31 children, the mother was interviewed.

--In the case of 2 children, the father was interviewed.

--In the remaining 7 children, both parents participated in the interviews.

Parents were asked to participate in interviews that collected information about:

--Their child’s diagnostic journey

--The way they believed their child’s epilepsy was being managed

--Their awareness of the impact of neurobehavioral difficulties their child may experience

--The medical and educational supports available to their family

--The impact their child’s epilepsy had on the way the family functioned

--Their need for parental support

The data collected during interviews were analyzed by the research team.

Summary of Study Findings

--The journey from their child’s first seizure to diagnosis was not easy to navigate.
       Delays in referrals to a specialist and delays to diagnosis were noted.
       Need to have more time to address concerns with medical team at time of diagnosis.
       Parents want more direction to find reliable resources for learning about their child’s diagnosis.
--Ongoing concerns and questions about use of anti-seizure medications and side effects.
--Need for integrated care in childhood epilepsy so that neurodevelopmental, behavioral, and learning issues could be assessed and treated early.
--Inconsistent availability of treatment and educational support.
--Neurobehavioral difficulties had greatest impact on their child’s quality of life.
--Family function was impacted by poor sleep for parents and siblings.
--Restrictions on family activities due to seizures or challenging behavior were noted.
--Financial strain because of the need to work less to accommodate hospital appointments.
--Need for support in coping with concerns for their child’s future.
--More frequent informational and emotional support was requested by parents

What Does This Mean?

This study provides information that supports how epilepsy in young children can have a wide range of impact on families. It also highlights the need for more research to improve how children with early onset epilepsy receive care and how their parents receive information and support.

Sharing concerns about your child’s overall health and wellbeing with their epilepsy doctor or nurse will ensure the appropriate assessments, treatments, and supports are in place. Making time to reflect on your needs as a parent and caregiver is important. This will help you to identify and ask for the information, emotional support and resources required to help you and your family cope with challenges, beyond seizures, that epilepsy can bring.

Article published in Epilepsy & Behavior, January 2019.