It is a terrifying helplessness that one feels as a parent knowing that your child’s brain is misfiring so badly that if left to continue untreated it will result in a vastly reduced life expectancy and severely reduced intellectual function.
Epilepsy is much more than seizures. For people with epilepsy, the disorder is often defined in more everyday terms, such as challenges in school, uncertainties about social and employment situations, limitations on driving a car, and questions about independent living. Family members also may struggle with how to best help their loved one and maintain their family life. Because of the range of seizure types and severities and the high rate of comorbid health conditions, the types of issues that have an impact on quality of life for people with epilepsy and their families and the degree to which they are affected vary widely. As a result, the range of community services potentially needed may be extensive (Table 6-1).
This chapter aims to provide a brief introduction to the diversity of ways in which the lives of people with epilepsy are affected by the disorder and the range of community efforts that can provide support and assistance. The chapter begins with an overview of quality of life and the facets of quality of life that are particularly relevant for differing age groups. The major areas of focus for community services are then discussed—families, day care and school, sports and recreation, employment, transportation, housing, and first aid training—with each section providing the committee’s thoughts on next steps and opportunities to be explored. The chapter concludes with a discussion of navigating the broad array of community services and cross-cutting opportunities to improve services for people with epilepsy and their families.
Quality of life is a person’s subjective sense of well-being that stems from satisfaction with one’s roles, activities, goals, and opportunities, relative to that individual’s values and expectations, within the context of culture, community, and society. According to the World Health Organization (1996), “Quality of life is defined as individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (p. 5).
The term “health-related quality of life” is generally used when referring to quality of life in the context of a person’s health status (CDC, 2011a; Wilson and Cleary, 1995). Health-related quality of life is multidimensional, and for people with chronic conditions such as epilepsy, it is often related to functioning in three areas: physical, psychological, and social (Elliott and Mares, 2012; Koot, 2001; Solans et al., 2008). For the