Fostering epilepsy self management: The perspectives of professionals

• Published in: Epilepsy & behavior Vol. 19; no. 3; pp. 255 - 263
• Main Authors: Clark, Noreen M, Stoll, Shelley, Youatt, Emily J, Sweetman, Marie, Derry, Russell, Gorelick, Arlene
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.11.2010
• Subjects: Attitude to Health; Clinical care; Disease management; Epilepsy; Epilepsy - psychology; Health Occupations; Humans; Interventions; Key informant; Neurology; Partnerships; Patient Acceptance of Health Care; Practice Patterns, Physicians; Professional perspectives; Psychosocial; Qualitative research; Quality Assurance, Health Care; Self Care; Self management; United States; United States; Qualitative research; Psychosocial; Interventions; Epilepsy; Self management; Partnerships; Clinical care; Disease management; Professional perspectives; Key informant
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2010.08.033

Abstract 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).