"Untold Distress" - How did the COVID-19 pandemic affect those who had previously experienced an epilepsy-related bereavement?

PURPOSE: This study explores the impact of the COVID-19 pandemic and lockdown on people with lived experience of sudden bereavement as a consequence of an epilepsy-related death. METHOD: We developed an online survey with fixed choice and open-ended response formats to collect data on grief symptoms and well-being during the pandemic. A total of 275 people bereaved by epilepsy-related deaths between 1980-2020 participated in this study: with 79 participants providing free-text responses for inductive thematic analysis. RESULTS: In total, 84% of participants reported a bereavement following a sudden death of a person aged under 40, with 22% aged 19 and under. The majority (77% of participants) reported they had been thinking more about the person who died compared to before the COVID-19 outbreak and 54% had experienced more distressing flashbacks to the time of death. Additionally, 61% reported more difficulties falling asleep and staying asleep and 88% of participants reported that the outbreak and response measures had negatively impacted upon their mental health. Medication was being taken for a diagnosed mental health condition by 33% of participants at the time of the study. We categorized these negative experiences during COVID in to four main-themes - 'Family', 'Lifestyle', 'Personal Well-being' and 'Health Services and Shielding Populations'. The 'Personal Well-being' theme was inextricably linked to grief symptoms including 'reflection on the death', 're-exposure to feeling', 'grief', 'salience of sudden deaths in the media' and 'inability to commemorate anniversaries and rituals'. These findings were consistent for bereaved people irrespective of the recency of the death. CONCLUSION: This study highlights the impact of the disruption caused by the pandemic on the grief-management of those bereaved by epilepsy-related death. Grief is not static and its management is connected to the psychosocial and formal support structures that were disrupted during the pandemic. The removal of these supports had an adverse effect upon the mental health and well-being of many bereaved. There is an urgent need for a system-wide transformation of epilepsy and mental health services to be inclusive of the needs and experiences of people impacted by sudden deaths in epilepsy and the contribution of the specialist service developed by families and clinicians to meet this gap.

Learnings from supporting traumatic grief in the aftermath of sudden epilepsy deaths.

The majority of epilepsy deaths are sudden, unexpected, and most prevalent among young adults. The number of people affected by a death can be high, as extended family and social networks survive. Those bereaved are at risk of developing traumatic and complex grief reactions and need access to specialist bereavement support as soon as possible after a death. It helps bereaved families to know how the death happened. They want lessons to be learnt and deaths to be prevented in future. The process of investigation into the death - which can contribute to these aims - may alienate families if not handled well and cause further trauma. Loss of participation by those bereaved can lead to suboptimal investigation and missed opportunities for learning and prevention. With integrated specialist emotional and practical support, tailored to the individual, families can be empowered to participate as they choose, with those working to understand and prevent epilepsy deaths. SUDEP Action (formerly Epilepsy Bereaved) is a charity which provides specialist services for people bereaved by epilepsy. It is the only organization which delivers these services globally. It was set up by the bereaved for the bereaved and has developed its model through more than twenty years' experience of supporting bereaved people. If the bereaved are signposted to specialist support of the sort SUDEP Action provides as soon as possible after a death, that early intervention can help to alleviate the effects of traumatic bereavement and restore an element of control and choice as they navigate what is to come. Early intervention by signposting to skilled experienced epilepsy death-related bereavement services could be vital.