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Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis.

Collard, S. and Regmi, P., 2019. Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis. Epilepsy & Behavior, 94 (May), 20 - 28.

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DOI: 10.1016/j.yebeh.2019.02.015


People with epilepsy (PWE) have a two- to threefold increased chance of premature death due to the condition. Interested in exploring the first-person perspective on this topic, we conducted a narrative synthesis to present the qualitative insight of PWE, their family, friends, and healthcare providers (HCPs) in relation to epilepsy-related death. A comprehensive electronic search of all peer-reviewed qualitative studies was conducted through databases using relevant keywords and Medical Subject Headings (MeSH) terms. Handsearching and exploration of pertinent gray literature was conducted thereafter. After a comprehensive literature search, the decisions of inclusion of literature were discussed and confirmed between the two authors. A total of 20 peer-reviewed papers were included. Within this, 17 were qualitative or mixed methods studies, and three were gray literature and guidelines/recommendations in discussing sudden unexpected death in epilepsy (SUDEP) with PWE and their families. The resultant main categories were the following: a) understanding of SUDEP and b) discussion of SUDEP. Findings show that there is an overall lack of understanding of unexpected epilepsy-related death for PWE and their relations. The literature focused on the education of PWE and their family in relation to SUDEP, and therefore, there is a lack of discussion on the general topic of epilepsy-related death. Findings show the conflicting perceptions, feelings, and thought processes that occur in learning about and deciding to discuss SUDEP as a HCP, PWE, or family/friend of a PWE. The literature suggests that it would be appropriate and necessary to discuss the topic of SUDEP with patients and their family members upon diagnosis.

Item Type:Article
Additional Information:Funded by Qualitative insights into epilepsy-related death and prevention: A narrative synthesis
Uncontrolled Keywords:Epilepsy; SUDEP; Status epilepticus; Healthcare professional; Quality of life; Epilepsy-related death
Group:Faculty of Health & Social Sciences
ID Code:32083
Deposited By: Symplectic RT2
Deposited On:20 Mar 2019 13:36
Last Modified:14 Mar 2022 14:15


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