Date of Defense:
April 1, 2016
Although it is the fourth most common neurological disorder in the United States,
epilepsy remains one of the most misunderstood chronic conditions today (Institute of Medicine, 2012). Epilepsy is defined as a disorder of the brain that causes seizures (Centers for Disease Control and Prevention, 2016). It is estimated that 150,000 new cases are diagnosed annually in the United States, and one in 26 individuals will develop epilepsy at some point in their lifetime (Institute of Medicine, 2012). Furthermore, epilepsy is linked to numerous co-morbidities, including: heart disease, autism spectrum disorders, Alzheimer’s disease, depression, anxiety, and learning and memory problems (Institute of Medicine, 2012). Public health efforts can help reduce the occurrence of epilepsy’s known risk factors, and improve quality of life for those living with the disorder (Institute of Medicine, 2012).
Epilepsy can occur at any point in the lifespan, and has its highest incidence rates both in early childhood and the elderly (Institute of Medicine, 2012). Children and teens living with epilepsy face unique concerns. The unpredictable nature of seizures can occur at school, while driving, or while playing sports. Children with epilepsy are at
increased risk for mental health, developmental, and physical co-morbidities (Russ, Larson, & Halfon, 2012).
While epilepsy affects family dynamics at any age in the lifespan, in cases of childhood epilepsy parents and siblings are uniquely affected. Depending on the age of the child, parents likely have a critical role in accessing care, monitoring medication adherence, and helping their child adapt to their unpredictable medical condition. Seizures are often frightening for family members to witness (Franks, 2003), and epilepsy can impact a range of family dynamics including caregiving stressors, marital strain, and impacts of siblings (Bujoreanu, Ibeziako, & Demaso, 2011; Franks, 2003).
As a dual degree Masters in Public Health and Masters in Social Work student, the Epilepsy Foundation of Minnesota was an ideal placement for me because it fulfilled the field requirements for both degree programs. The field experience was initiated through the School of Social Work, which requires students to complete a 480-hour internship for the final year in their Master’s program. From September 2011 through May 2012, I interned on-site at the Epilepsy Foundation of Minnesota’s office in St. Paul two days a week.
Due to my particular interest in child and adolescent health, a key learning objective was to gain practice in program development for youth and families affected by epilepsy. During my internship, I was afforded the opportunity to create and conduct an online survey to Metro-area teens affected by epilepsy, which helped inform the development of a newly forming Teen Connect program. I have an interest in siblings of children with special health care needs, and conducted exploratory research on other health-specific organizations that utilize sibling programs. Through my participation at many program events, I also had the opportunity to gain first hand knowledge of concerns unique to youth and teens living with epilepsy.
Additionally, my field experience also included learning objectives that were focused around patient advocacy and empowerment, as well as grant writing. I had the opportunity to help plan and participate in the annual Epilepsy Awareness Day at the Hill which focused on state level advocacy and raising awareness of epilepsy. Under the direction of my field instructor, I also researched and helped apply for grants to support the programming of the Epilepsy Foundation of Minnesota.
The Epilepsy Foundation of Minnesota is a non-profit organization that offers programs and services to educate, connect and empower people affected by seizures throughout the state of Minnesota and Eastern North Dakota. The Epilepsy Foundation of Minnesota is an affiliate of the national Epilepsy Foundation.
Coming into this internship, I had very little practical knowledge about epilepsy as a medical condition, or how a health-specific non-profit organization operates. Through the field experience I learned a tremendous amount about epilepsy’s epidemiology and the huge spectrum of ways it affects people’s lives differently. Furthermore, I gained public health and community practice social work skills in: grant writing, advocacy work, and program development.
Because of the many psychosocial needs expressed by youth and families affected by seizure disorders, the Epilepsy Foundation of Minnesota should continue to pursue it focus around family and youth support programs. Residential camp opportunities for children with special health care needs are an excellent opportunity for youth to gain valuable coping skills, and provide parents and guardians with invaluable respite. To determine needs and assess effectiveness, evaluation tools should be continually utilized in program planning for the Epilepsy Foundation and other non-profit organizations. To mitigate the many complexities of health disparities, efforts to reach low-income communities and communities of color should be expanded. To improve sustainability, other non-profit organizations may consider adopting a similar business model as the Epilepsy Foundation, which is partially funded through its clothing and household goods donation program.
The Epilepsy Foundation of Minnesota provides important supportive services that educate, empower, and connect individuals living with epilepsy throughout Minnesota and Eastern North Dakota, as well as their families. As a small non-profit, its clothing donation program provides a degree of fiscal stability to the organization. Grant opportunities and other funding streams should be continually pursued in order to maximize the organization’s ability to deliver its vital support services. Because there are many other non-profit organizations that provide similar type of supportive programming to individuals affected by other chronic diseases besides the epilepsy, relationship building and idea sharing between these organizations could benefit individual organizations in their program development, outreach to communities, and sustainability.
Bujuoreanu, I. S., Ibeziako, P., & Demaso, D. R. (2011). Psychiatric concerns in pediatric epilepsy. Pediatric Clinics of North America, 58, 973-988.
Centers for Disease Control and Prevention (2016). Epilepsy Fast Facts. Retrieved March 18, 2016 from http://www.cdc.gov/epilepsy/basics/fast-facts.htm
England, M. J., Liverman, C. T., Schultz, A. M., & Strawbridge, L. M. (Eds). (2012). Epilepsy across the spectrum: Promoting health and understanding. Institute of Medicine (US): Committee on the Public Health Dimensions of the Epilepsies.
Franks, R. P. (2003). Psychiatric issues of childhood seizure disorders. Child & Adolescent Psychiatric Clinics of North America, 12, 551-565.
Russ, S. A., Larson, K., & Halfon, N. (2012). A national profile of childhood epilepsy and seizure disorder. Pediatrics, 129, 256-264.