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. Objectives: 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 to minimize the inherent emotional burden. Methods: The principles of fundamental qualitative description were used to guide this study of parent experiences and perceptions. Stratified purposeful sampling included (i) parents who lost children to SUDEP and, parents of children with (ii) moderate to severe (iii) mild and, (iv) new onset epilepsy. Data were collected through 1:1 interviews and focus groups. The principles of content analysis were used to code and categorize data. Line by line coding of the transcripts followed. Second level coding was then conducted to collapse the codes into categories and themes. Results: 42 parents participated in the study. Focus group interview were conducted with 36 parents (M:F- 15:21) of 21 children. 6 parents (M:F- 2:4) of 4 children who died due to SUDEP participated in 1 to 1 interviews. 63% of parents had previously heard about SUDEP, but most of could not describe the meaning of SUDEP but overestimated the risk. There was full consensus, across both genders and regardless of seizure severity, that routine counseling about SUDEP should be provided by pediatric neurologists, during the appointment when the diagnosis of epilepsy is shared with parents, with opportunities for follow-up and discussions with clinic nurses or social workers. There was consensus among all participants that it is the responsibility of the pediatric neurologist to provide routine SUDEP counseling. Parents were emphatic in explaining that they should not first learn about SUDEP from a pamphlet or an Internet website. It was identified that SUDEP counselling should occur in a face-to-face interaction between the neurologist and the parents, and not be provided in a phone consultation. Parents expressed a need to be informed of the risk of SUDEP. However, some parents expressed that it is important for neurologists to stress that SUDEP is rare and to balance the message of risk, with one of hope. There was group endorsement for also receiving written information about SUDEP to reinforce the content shared by the neurologist. Participants identified that both parents (as appropriate) should be present at the appointment to receive routine SUDEP counseling. There was consensus that it is the parents' decision as to whether or not, and when to inform the child about the risk of SUDEP. Conclusions: Parents expressed their clear preferences on whether, when, where and how to deliver routine counseling on SUDEP. Over all credibility of the data was enhanced by data type (focus groups and 1:1 interviews) and data source (purposeful stratified sampling) triangulation. Results of this study will help create a practise guideline on how to counsel parents of children with epilepsy on the risk of SUDEP.