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SUDEP: what do parents want to know?
Rajesh Ramachandrannair1, Susan M Jack, Brandon F Meaney
1Department of Pediatrics (Neurology), McMaster University, 1280 Main Street West, Hamilton, Ontario L8S 4K1, Canada.
Epilepsy & Behavior : E&B
|October 31, 2013
Summary
Parents want routine counseling about Sudden Unexpected Death in Epilepsy (SUDEP) when their child is diagnosed with epilepsy. Pediatric neurologists should provide this information face-to-face, with opportunities for follow-up support.
Area of Science:
- Neurology
- Pediatrics
- Psychology
Background:
- Sudden Unexpected Death in Epilepsy (SUDEP) is a significant concern for families affected by epilepsy.
- Effective communication strategies are crucial for delivering sensitive information about SUDEP risks to parents.
- Parental understanding and emotional well-being are paramount when discussing epilepsy-related mortality.
Purpose of the Study:
- To explore parental perspectives on the timing and delivery of SUDEP information.
- To identify optimal counseling approaches for discussing SUDEP risks with families.
- To minimize the emotional distress associated with SUDEP counseling.
Main Methods:
- Qualitative descriptive study utilizing focus groups and in-depth interviews.
- Stratified purposeful sampling of parents with children across various epilepsy severities and those who lost children to SUDEP.
- Directed content analysis of interview data to identify key themes and categories.
Main Results:
- Parents desire routine SUDEP counseling from pediatric neurologists at the time of epilepsy diagnosis.
- Face-to-face consultations with opportunities for follow-up are preferred for SUDEP discussions.
- Parents want to be informed of SUDEP risks and prefer written materials to supplement verbal counseling.
Conclusions:
- All parents of children with epilepsy should receive routine SUDEP counseling and ongoing support.
- Pediatric neurologists need to enhance their communication skills for effective SUDEP counseling.
- Parental involvement in decisions regarding child presence and information disclosure is essential.
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