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Determining patient needs: A partnership with South Carolina Advocates for Epilepsy (SAFE)
Janelle L Wagner1, Byron Brooks2, Gigi Smith1
1College of Nursing, Medical University of South Carolina, Charleston, SC, USA; Comprehensive Epilepsy Program, Medical University of South Carolina, Charleston, SC, USA; Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA.
Purpose:
The purpose of this study was to collaborate with a community partner to administer a current needs assessment of persons with epilepsy (PWE) and determine the types of resources that PWE would like to access through the community partner.
Methods:
A self-report needs assessment survey was administered to caregivers and PWE across the state of South Carolina during a community partner educational workshop (n=20) and via secure software distributed through an email link (n=54).
Key Findings:
The most frequently reported challenges (>50%) were concerns about finding time to participate in epilepsy community activities, the personal safety of the PWE, finding social connections or social support, finding mental or behavioral health services, and work concerns. However, top ranked concerns centered on personal safety (27.8%), lack of insurance/not enough money to pay for epilepsy treatment (15.3%), and difficulty with daily management of epilepsy (13.9%). Participants reported likely engagement with the epilepsy community partner via in-person meetings, over the phone, and through social media contacts; however, there were differences between PWE and caregivers regarding preferences for communication. Almost 60% endorsed that they would likely participate in a brief program to learn skills to manage their epilepsy daily.
Significance:
Persons with epilepsy in South Carolina continue to have many unmet needs and would access resources, if available, from a state-wide epilepsy community partner via various modes of communication.