Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging. Doctors called her seizures attacks and spells, but never seizures…. [A]s a family living with these [epilepsy] statistics, what do we need? In the early years, we needed the facts—like the fact that approximately 33 percent of people with epilepsy don’t respond to treatment. We lost a great deal of trust in doctors because of their choice to censor.
The diagnosis of epilepsy, although given to an individual, affects the entire family and its constellation of friendships and other relationships. At onset all are confronted with the immediate need to learn about the disorder and its management. Receiving helpful information and education1 in the diagnostic phase of a chronic health condition can facilitate coping, because early perceptions may affect long-term adjustment to the condition (Johnson, 2003). Living with epilepsy, its unpredictable seizures, and its comorbid conditions presents many challenges over time. Again, continued educational efforts can play a key role in helping people learn to live with and understand epilepsy and its effects over the life span. Thus, individuals and families need education and skills building throughout the course of the disorder, particularly during times of change, such as an increased frequency of seizures, changes in treatment (e.g., switching medications, starting a new treatment option, discontinuing a medication or other treatment option), and major life transitions (e.g., from youth to adulthood, from adulthood to older adulthood).
This chapter describes goals and priorities for educating people with epilepsy and their families, their knowledge acquisition needs across the life span, and methods through which individuals and families currently learn about epilepsy. It reviews different models, programs, and approaches to providing epilepsy education that have been developed and contrasts them with educational efforts in other chronic disease fields, in order to identify strategies for improvement.
1For this report, the committee conceptualized awareness, information, education, and skills building as representing a rough continuum of knowledge development regarding epilepsy. Awareness is often the first step in knowledge development (discussed further in Chapter 8) and can be targeted to reducing stigma. For some diseases and conditions, awareness suffices for people in the general public. Information is what the public, to be well informed, needs to know about epilepsy (or other common medical conditions). Information tends to be general but suffices for most people not involved in the care or supervision of individuals with epilepsy. Education is the goal of efforts to provide more in-depth knowledge that increases understanding, decision-making capacity, and preparedness for action among people with epilepsy, families, and caregivers. Skills-building efforts are aimed at helping people acquire the specific capacities to carry out certain tasks. In the context of epilepsy, skills-building is often aimed at improving self-management and care provided by family members or other caregivers and begins with education.