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

Epilepsy & Behavior : E&B
Janelle L WagnerAnbesaw Selassie

Abstract

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. 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). 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 participat...Continue Reading

References

Aug 30, 2002·Epilepsia·Ettore BeghiUNKNOWN RESt-1 Group
Oct 10, 2006·Nursing Outlook·Margaret GreyRuth McCorkle
Aug 4, 2009·Epilepsy & Behavior : E&B·Janelle L WagnerAnbesaw W Selassie
Oct 20, 2009·The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses·Cheryl P ShoreCynthia S Johnson
Jan 29, 2011·Epilepsy & Behavior : E&B·Robert T FraserNaomi Chaytor
Mar 19, 2011·Seizure : the Journal of the British Epilepsy Association·Janelle L WagnerStephanie Hrisko
Mar 20, 2012·Seizure : the Journal of the British Epilepsy Association·Janelle L WagnerPamela Ferguson
Oct 9, 2012·Epilepsy & Behavior : E&B·Mary Jane EnglandLarisa M Strawbridge
Apr 1, 2014·Epilepsy & Behavior : E&B·Gigi SmithKimberly Griesemer
Sep 12, 2014·Epilepsia·Lina NashefRima Nabbout

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Citations

Oct 30, 2016·Epilepsy Research·Janelle L WagnerByron Brooks
Oct 27, 2016·Seizure : the Journal of the British Epilepsy Association·Steven C Schachter
Jun 3, 2017·Epilepsy & Behavior : E&B·Lorna MyersJace Jones
Aug 11, 2018·Clinical Nurse Specialist CNS·Rebecca I TehanDonna S Martsolf
Jun 30, 2021·Nursing Outlook·Dena Schulman-GreenMargaret Grey

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