Fostering epilepsy self management: The perspectives of professionals

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).

Research Highlights
► 101 professionals serving people with epilepsy were interviewed about epilepsy self management.
► Most frequently cited challenges for the field: insufficient research and narrow approaches.
► Top challenges for people with epilepsy: psychological effects and finding quality health care.
► Top challenges for clinicians: limited time and clinical focus that excludes psychosocial issues.
► Few respondents with personal epilepsy experience cited stigma as a challenge.