Abstracts

Rationale: Aim: To understand the range of bereaved relatives views on whether & how to approach the issue of SUDEP with patients with epilepsy, and to clarify the optimal timing & formulation of the information.Methods: We conducted in depth one to one telephone interviews, using a semi-structured interview guide, with close relatives of patients died due to SUDEP. Interviews were audiotaped & transcribed verbatim. We used directed content analysis in this qualitative exploratory study. Results: 21 individuals were independently interviewed about their experiences of losing a relative to SUDEP. The sample included 17 females and 4 males, and was made up of 4 siblings, 5 spouses/partners, and twelve parents. Experiences at the time of SUDEP : Participants commonly speculated that their relative had experienced a seizure during sleep. Participants who were not present at the time of death were more likely to describe feeling guilty for not being there. Few participants had heard of SUDEP prior to their relatives deaths, and most guessed that their relatives had not known about it either. Opinion on whether to discuss SUDEP : There was overwhelming support for families and patients to be educated about SUDEP, with the benefits of knowing (e.g., possible prevention, shock avoidance) outweighing the drawbacks (e.g., fear, overbearing family). Opinion on the method and timing of SUDEP discussion : Some participants felt that anybody and everybody involved in a patient s care is responsible to tell them about SUDEP. Others identified neurologists as the most appropriate messenger because they were most knowledgeable and credible. Most participants expressed that information about SUDEP should be delivered face-to-face (with written material to supplement) and should happen early on, either at time of diagnosis or shortly thereafter. Opinion on the content of SUDEP discussion : Participants identified that patients should know about what SUDEP is, the risk factors associated with it, and preventive measures. Some stressed ongoing reminders about SUDEP, for those with histories of poor medication compliance. Opinion on reflecting back : Participants expressed anger, guilt, and shock upon learning about SUDEP after their relative s death. A prevalent theme in this project was Things I would have done differently. Examples included monitoring relatives more, and having conversations about the risks of SUDEP and taking better care of themselves. Life after SUDEP : Some participants found meaning in their loved one s deaths (e.g, strengthened friendships, valuing of time with others, career decisions). Others are still struggling, describing jaded views on life or being consumed by regret. Conclusions: This is the first qualitative study analyzing the experiences of bereaved relatives regarding SUDEP counseling with patients. Overall preference was to have routine face to face counseling with patients either at the time or shortly after the diagnosis of epilepsy, with focus on the accurate risk and potential strategies for prevention.