Rationale:
Sudden unexpected death in epilepsy (SUDEP) is the most common epilepsy-related cause of death. These deaths are unanticipated and many patients/family members are not often adequately counselled about SUDEP risk. Both of these factors may exacerbate the emotional distress and prolong the grieving process among those bereaved by SUDEP. A nuanced understanding of this grief experience is necessary to ensure adequate support is available to families. This study aims to explore in detail the grief experienced by family members and caregivers bereaved by SUDEP.
Method:
Family members/caregivers bereaved by SUDEP were contacted and invited to complete an online survey through The Epilepsy Foundation/SUDEP Institute, the Danny Did Foundation and the North American SUDEP Registry. Details on characteristics of the deceased, circumstances of the death, pre-mortem knowledge on SUDEP, emotions, changes in personal life experienced after the death, and resources for support were collected and analyzed. Results206 family members/caregivers completed the survey; 77% were parents of the deceased. A majority of deaths occurred 2-10 years ago. 69% of respondents had not heard of SUDEP prior to the death and 69% of respondents felt angry/frustrated about not having been informed. Effects of the death included negative changes in respondents’ mental and physical health, work, and relationships with spouses, children, and friends, particularly in the initial phases of the grief process (Table 1). The most common emotions that respondents recalled feeling at 3 months were sadness (94%), shock (80%), guilt (73%), and anger (62%). By 1-2 years after death, the respondents recalled still feeling sad (95%) but anger (43%), guilt (45%), and shock (26%) were less common and acceptance was more common (39%). Sources of support included family/friends, peers affected by SUDEP, and counseling. 77% of respondents recommended medical professionals offer condolences after the death and 89% recommended they answer questions. 88% recommended advocacy groups provide a listening ear and 81% recommended they provide support group information.
Conclusion:
The findings provide insight into the complex effects of the grief experienced by those bereaved by SUDEP and suggest a need for improved education and support. Enhanced communication between families/caregivers and medical professionals regarding SUDEP prior to and immediately after the death may help ease the guilt, shock, and anger experienced by the bereaved. Advocacy and support groups, counselors, self-help activities, and peers experiencing similar losses are also critical sources of support and information throughout the grief process.
Funding:
:n/a
FIGURES
Figure 1