Fostering epilepsy self management: The perspectives of professionals

University of Michigan at Ann Arbor, Ann Arbor, MI 48109-2029, USA.
Epilepsy & Behavior (Impact Factor: 2.26). 11/2010; 19(3):255-63. DOI: 10.1016/j.yebeh.2010.08.033
Source: PubMed


Epilepsy clinical, academic, and human service professionals (N = 101) were surveyed regarding the challenges people with epilepsy face managing their condition. 30% of the respondents had personal experience with epilepsy. Interviews were transcribed and coded into themes. Response differences by profession and personal experience were examined using chi-squared tests. The two greatest challenges reported most frequently for people with epilepsy were finding high quality health care and managing psychological and emotional effects. The two most important epilepsy outcomes were seizure control and quality of life. The two greatest challenges facing clinicians were too little time with patients and limited clinical focus. The two main weaknesses in the field were insufficient research and narrow approaches to addressing epilepsy. Significant differences in responses across professions were evident as were differences according to personal experience with epilepsy. Few clinicians cited quality of care as a major challenge (p<0.0001) compared to other professions. Few respondents with personal experience with epilepsy cited stigma as a challenge (p = 0.006).

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Available from: Marie Sweetman, Aug 11, 2014
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    • "Emerging concerns included lack of convincing evaluations of self-management interventions, insufficient research describing the elements of management that are shared versus unique to individual patients [14], a tendency for clinical professionals to take too narrow an approach to epilepsy care [15], and failure to recognize the way the condition affects all aspects of functioning [15]. These factors represent antecedents to care plans and impact services that can be inadequate for the range and intensity of problems that patients face [15]. Survey studies of epilepsy care and self-management of people with epilepsy from socioeconomically diverse urban populations (n = 437 and n = 238, respectively) have provided similar conclusions; that is, too few programs exist in general and too few evidence-based programs are available to practitioners, community agencies, and families [12] [13]. "
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    ABSTRACT: The Managing Epilepsy Well (MEW) Network was established in 2007 by the Centers for Disease Control and Prevention Epilepsy Program to expand epilepsy self-management research. The network has employed collaborative research strategies to develop, test, and disseminate evidence-based, community-based, and e-Health interventions (e-Tools) for epilepsy self-management for people with epilepsy, caregivers, and health-care providers. Since its inception, MEW Network collaborators have conducted formative studies (n=7) investigating the potential of e-Health to support epilepsy self-management and intervention studies evaluating e-Tools (n=5). The MEW e-Tools (the MEW website, WebEase, UPLIFT, MINDSET, and PEARLS online training) and affiliated e-Tools (Texting 4 Control) are designed to complement self-management practices in each phase of the epilepsy care continuum. These tools exemplify a concerted research agenda, shared methodological principles and models for epilepsy self-management, and a communal knowledge base for implementing e-Health to improve quality of life for people with epilepsy.
    Epilepsy & Behavior 08/2013; 29(1):133-140. DOI:10.1016/j.yebeh.2013.07.002 · 2.26 Impact Factor
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    • "Studies indicate a number of epilepsy management issues among adult patients including poor knowledge about the disorder itself, its treatment, and consequences [7]; seizure frequency and medical adherence; and psychiatric and psychosocial aspects such as anxiety, depression, social stigma, cognition, and family adjustment [8]. These issues are most often reported separately in studies by either health care professionals [9] [10] or patients themselves [11], but rarely by both sources at the same time, using the same or similar metric. Intervention approaches in the form of psychosocial treatment, counseling/ psychotherapy, and educational programs widely share some, but not all, elements of traditional self-management programs (e.g., Lorig and colleagues' work, as described later). "
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    ABSTRACT: A consistent and serious empirical issue in the epilepsy self-management literature involves dropout and attrition in intervention studies. One explanation for this issue revolves around "top-down" intervention designs (i.e., interventions generated by epilepsy clinicians and researchers) and the potential for disparity with patient interests, capabilities, and perceived needs. The purpose of this study was to extend the work of Fraser et al. (2011) [19] by comparing perceptions regarding self-management problems, topics, and program design, between two subgroups of adult patients with epilepsy (n=165) and epilepsy clinicians (n=20). Results indicate differences in problem severity ratings, program emphasis (i.e., goal-setting, coping, education), and program leadership between clinicians and each patient subgroup to varying degrees. These findings highlight some of the differences in opinion between patients and clinicians and emphasize the need for patient-involved planning with regard to self-management programs. Implications and explanations are offered as points for consideration in self-management program development.
    Epilepsy & Behavior 09/2012; 25(2):150-5. DOI:10.1016/j.yebeh.2012.07.020 · 2.26 Impact Factor
  • Epilepsy & Behavior 10/2010; 19(3):216-7. DOI:10.1016/j.yebeh.2010.08.016 · 2.26 Impact Factor
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