Abstracts

Rationale: There is neither empirical evidence nor consensus on the question of whether to inform patients and family members about the possibility of SUDEP. We are in the process of evaluating these questions to better understand the families' views, concerns, dilemmas and expectations and follow with recommendations for counseling. By the end of this study we expect to understand the range of parental views on whether and how to approach the issue of SUDEP with families, to clarify the optimal timing and formulation of the information, and to learn from the true experts (the primary caregivers) the optimal counseling strategies in order to minimize the inherent emotional burden.Methods: The principles of fundamental qualitative description will be used to guide this descriptive and exploratory qualitative study of parent experiences and perceptions. Stratified purposeful sampling, or the identification of samples with the broader purposeful sample, will also be identified and will include primary caregivers (i) Who lost children to SUDEP, (ii) Of children with moderate to severe epilepsy, (iii) Of children with mild epilepsy, and (iv) Of children with new onset epilepsy. In-depth interviews and focus groups will be used to collect data from study participants. All interviews will be audiotaped and then transcribed verbatim with identifying information removed. The principles of content analysis will be used to code and categorize the focus group and interview data. First level analysis of the transcript will be segmenting into codes. The next step then involves a higher level of analysis by grouping the summaries of the first level coding into a smaller number of sets, themes or constructs Results: We aim to create a practice guideline on how to address the issue of SUDEP with patients and families based on the results. We were successful in obtaining funding from the Ministry of Health and Long Term Care, Ontario for the study.Conclusions: Scientific merit and clinical application of this methodology was proven by successful grant application. Results shall be presented.