Abstracts

Rationale: There are no published studies on the impact of SUDEP on bereaved relatives. Objectives of the study were to understand how SUDEP affected the lives of bereaved relatives and how they coped with it.Methods: The principles of fundamental qualitative description were used to guide this descriptive and exploratory qualitative study of bereaved relatives’ experiences after SUDEP in their loved ones. A purposeful sample of relatives were identified through an advocacy organization, Sudep Aware (www.sudepaware.org).Data were collected through 1:1 interviews using a semi-structured interview guide. Interview data were transcribed and content analysis was used to code, categorize and synthesize data. Second level coding was then conducted to collapse the codes into categories and themes.Results: A total of 21 individuals were independently interviewed about their experiences 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. All participants confirmed that they believed their loved ones died due to SUDEP. Participants commonly speculated that their relative had experienced a seizure during sleep. Most relatives were found by someone else after they had passed (in many cases, the participant). Among those who found their relatives, a great deal of shock and trauma was described. 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. There was some criticism of emergency response and medical professionals involved in providing insensitive or poor care immediately after SUDEP. Personal hardships described by participants following SUDEP included loss of personal identity, feeling depressed, feeling guilty, having panic attacks, requiring therapy, as well as having difficulty with anniversaries, dates and cleaning up a child’s room. Bereaved spouses and parents in particular spoke of experiencing challenges in maintaining other relationships following the death. Some participants spoke of experiencing increased financial hardships. Ways of coping included keeping oneself busy, honoring the memory of the loved one, relying on friends and families, and advocacy/community work (raising awareness on epilepsy and SUDEP).Conclusions: SUDEP affected several aspects of the day to day lives of bereaved relatives. Though methods of coping were similar to the usual strategies adopted by all bereaved relatives, advocacy work related to raising awareness about epilepsy and SUDEP was unique to this group.