SUDEP: Living with the knowledge.


Journal

Epilepsy research
ISSN: 1872-6844
Titre abrégé: Epilepsy Res
Pays: Netherlands
ID NLM: 8703089

Informations de publication

Date de publication:
08 2023
Historique:
received: 19 02 2023
revised: 17 05 2023
accepted: 01 06 2023
medline: 12 7 2023
pubmed: 10 6 2023
entrez: 9 6 2023
Statut: ppublish

Résumé

To understand how knowledge of sudden unexpected death in epilepsy (SUDEP) impacted the lives of adult persons with epilepsy (PWE) and primary caregivers of both adults and children with epilepsy. The principles of fundamental qualitative description guided this descriptive and exploratory qualitative study to document patients' and caregivers' perceptions and experiences. A purposeful sample of individuals (18 years or older) diagnosed with epilepsy or primary caregivers of PWE completed a single in-depth, semi-structured, one-to-one telephone interview. Categories of findings were developed using directed content analysis. A total of twenty-seven participants completed the study. This consisted of eight adult females and six adult males with epilepsy, ten female caregivers, and three male caregivers of PWE. All participants had become aware of SUDEP at least 12 months before their interview. Most were not informed about SUDEP by their treating neurologist and instead learned about SUDEP via alternative sources (e.g., the internet). All participants believed that knowledge of SUDEP outweighed the risks of being informed about it. Anxiety/fear related to SUDEP disclosure was generally not long-lasting. Caregivers of PWE were more directly impacted by SUDEP disclosure than adult PWE. Caregivers were more likely to make lifestyle/management changes due to learning about SUDEP (e.g., increased supervision and co-sleeping). Participants agreed that follow-up clinical support should be provided after SUDEP disclosure. Disclosure of SUDEP risk may have more significant impacts on caregivers of PWE than adult PWE in the form of lifestyle changes and epilepsy management. After SUDEP disclosure, follow-up support should be offered to PWE and their caregivers, which should be incorporated into future guidelines.

Identifiants

pubmed: 37295320
pii: S0920-1211(23)00102-X
doi: 10.1016/j.eplepsyres.2023.107177
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

107177

Informations de copyright

Copyright © 2023 Elsevier B.V. All rights reserved.

Déclaration de conflit d'intérêts

Conflicts of interests Rajesh RamachandranNair received research grant from the Ontario Brain Institute and the Ontario Ministry of Health and Long-Term Care through the Hamilton Academic Health Sciences Organization. The remaining authors have no conflicts of interest.

Auteurs

Robyn Whitney (R)

Division of Neurology, Department of Paediatrics, McMaster University, Hamilton, Ontario, Canada.

Sonya Strohm (S)

School of Nursing, McMaster University, Hamilton, Ontario, Canada.

Tamzin Jeffs (T)

SUDEP Aware, Toronto, Ontario, Canada.

Kevin C Jones (KC)

Division of Neurology, Department of Paediatrics, McMaster University, Hamilton, Ontario, Canada.

Susan M Jack (SM)

School of Nursing, McMaster University, Hamilton, Ontario, Canada.

Rajesh RamachandranNair (R)

Division of Neurology, Department of Paediatrics, McMaster University, Hamilton, Ontario, Canada. Electronic address: rnair@mcmaster.ca.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH