The Epilepsy and Behavior journal recently published a small population study interviewing the parents of young children (ages 1-7) with epilepsy. Their main goal was to gain a comprehensive understanding of the experiences, challenges, and needs of these parents. The study consisted of 40 total families and interviews focused on these main topics:
· Diagnostic journey
· Parental perception of epilepsy management
· Awareness/impact of neurobehavioral disorders on child’s quality of life
· Availability of therapeutic and educational supports
· Impact on family functioning
· Need for parental support
Some of the concerns researchers found centered on referral delays or lack of time and direction from the healthcare providers. Parents specifically wished for more thorough explanations about possible side effects of anti-epileptic drugs and for a more integrated approach to treatment, including not only goals of seizure freedom but addressing behavioral and mental health goals as well.
The stress on family life impacted not only parents but also siblings and extended families, affecting sleep, family activities, holidays, finances and job security. More frequent emotional support was desired across the board among parents.
Experiences and needs of parents of young children with active epilepsy: A population-based study.
Jones C, Atkinson P, Memon A, et al. Epilepsy & Behavior, 90 (2019): 37-44.
One of the best pieces of advice I received soon after our daughter was diagnosed was to make sure to nurture our marriage in the midst of all the appointments, blood tests, MRIs, EEGs, and hospital stays. It is now the same thing I make sure to emphasize when I am talking to parents facing a new diagnosis of epilepsy, cerebral palsy, or other neurological condition in their child. I also tend to recommend keeping a diary or journal just as a place to write things down so you can mentally rest. You can make to-do lists, track seizure activity to have handy for the next doctor’s visit, or just have a place to unload your fears or dreams for your child. But sometimes you need more.
The impact of epilepsy or any serious medical illness on a family has a ripple effect. If you don’t have a support system those ripples can turn into tsunami waves that have the potential to destroy marriages, families, and friendships. Find your source of strength, courage and hope-whether it is your faith, significant other, parent or friend-and nurture it.
We are looking forward to expanding and improving our Keto Friends network in a direct effort to meet the needs of parents like you (and me) who need and deserve personalized emotional support. If you have any interest in becoming a support parent please email us at firstname.lastname@example.org.