Determining patient needs: A partnership with South Carolina Advocates for Epilepsy (SAFE)

作者：Wagner Janelle L^*; Brooks Byron; Smith Gigi; Marie Karen St; Kellermann Tanja S; Wilson Dulaney; Wannamaker Braxton; Selassie Anbesaw

来源：Epilepsy and Behavior, 2015, 51: 294-299.

DOI：10.1016/.yebeh.2015.08.007

• Needs assessment
• Community partner
• Epilepsy advocacy
• Self-family management

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 in 20) and via secure software distributed through an email link 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.

• 出版日期2015-10