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SUDEP: To discuss or not? Recommendations from bereaved relatives
Rajesh Ramachandran Nair1, Susan M Jack2, Sonya Strohm3
1Department of Pediatrics (Neurology), McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1, Canada.
Bereaved relatives desire healthcare providers to discuss Sudden Unexpected Death in Epilepsy (SUDEP) risks with patients. Optimal timing and setting for SUDEP counseling should be individualized.
Area of Science:
- Neurology
- Qualitative Research
- Patient Counseling
Background:
- Sudden Unexpected Death in Epilepsy (SUDEP) is a critical concern in epilepsy management.
- Understanding the experiences and preferences of bereaved families is crucial for improving SUDEP communication.
Purpose of the Study:
- To explore the experiences of relatives of individuals who died from SUDEP.
- To determine preferences for SUDEP counseling among bereaved families.
Main Methods:
- Qualitative descriptive study utilizing stratified purposeful sampling.
- Conducted in-depth interviews with 27 bereaved relatives.
- Employed directed content analysis for data synthesis.
Main Results:
- Consensus that healthcare providers should discuss SUDEP risks with patients.
- Preferred timing for SUDEP information is at or shortly after epilepsy diagnosis.
- Neurologists should deliver SUDEP information face-to-face, supplemented by written materials, emphasizing risk factors, prevention, and incidence rarity.
Conclusions:
- Bereaved relatives advocate for neurologists to inform patients about SUDEP risks.
- Individualized, case-by-case determination of SUDEP counseling timing and setting is recommended.
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