title: Managing epilepsy well: self-management needs assessment.
abstract: Epilepsy self-management interventions have been investigated with respect to health care needs, medical adherence, depression, anxiety, employment, and sleep problems. Studies have been limited in terms of representative samples and inconsistent or restricted findings. The direct needs assessment of patients with epilepsy as a basis for program design has not been well used as an approach to improving program participation and outcomes. This study investigated the perceived medical and psychosocial problems of adults with epilepsy, as well as their preferences for self-management program design and delivery format. Results indicated a more psychosocially challenged subgroup of individuals with significant depressive and cognitive complaints. A self-management program that involves face-to-face individual or group meetings led by an epilepsy professional and trained peer leader for 60 minutes weekly was preferred. Six to eight sessions focused on diverse education sessions (e.g., managing disability and medical care, socializing on a budget, and leading a healthy lifestyle) and emotional coping strategies delivered on weeknights or Saturday afternoons were most highly endorsed. Emotional self-management and cognitive compensatory strategies require special emphasis given the challenges of a large subgroup.
authors.affiliation: Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA. rfraser@u.washington.edu
authors.forename: Robert T
authors.initials: RT
authors.lastname: Fraser
authors.forename: Erica K
authors.initials: EK
authors.lastname: Johnson
authors.forename: John W
authors.initials: JW
authors.lastname: Miller
authors.forename: Nancy
authors.initials: N
authors.lastname: Temkin
authors.forename: Jason
authors.initials: J
authors.lastname: Barber
authors.forename: Lisa
authors.initials: L
authors.lastname: Caylor
authors.forename: Paul
authors.initials: P
authors.lastname: Ciechanowski
authors.forename: Naomi
authors.initials: N
authors.lastname: Chaytor
mesh_terms: D000328:Adult; D001008:Anxiety Disorders / Q000209:etiology; D003072:Cognition Disorders / Q000209:etiology; D003863:Depression / Q000209:etiology; D004827:Epilepsy / Q000175:diagnosis / Q000523:psychology / Q000628:therapy; D005260:Female; D006306:Health Surveys; D006801:Humans; D008297:Male; D008603:Mental Health / Q000706:statistics & numerical data; D008875:Middle Aged; D020380:Needs Assessment / Q000706:statistics & numerical data*; D011897:Random Allocation; D012044:Regression Analysis; D012648:Self Care / Q000379:methods*; D018709:Statistics, Nonparametric; D011795:Surveys and Questionnaires