What is the psychological impact on parents of learning about SUDEP? A mixed methods systematic review

BACKGROUND: We conducted a systematic review of the literature on parent responses to learning about Sudden Unexpected Death in Epilepsy (SUDEP) including cognitions/appraisals, emotions, and changes to parenting behaviour for their child with epilepsy. METHODS: A mixed methods systematic review approach was taken using guidance from the Joanna Briggs Institute (JBI). EMBASE, MEDLINE, PsycARTICLES, PsycINFO, and PubMed were searched. Risk of bias was assessed using Critical appraisal tools from the JBI. A total of 9 studies (4 qualitative and 5 quantitative) were included in the review with 677 participants. RESULTS: Parents want to know about SUDEP and prefer this information to come from their child's treating physician. They value time to process information and to follow-up with a healthcare professional. Parents want to be signposted to relevant organisations and sources of support. Parents report feeling anxious or stressed on learning about SUDEP. They can feel angry in cases when they had not been told. Parents report that the advantages of knowing about SUDEP outweigh the disadvantages. Parents report making changes to caregiving after learning about SUDEP including increased monitoring and supervision, increased compliance with medication, and increased information sharing with others. There was significant heterogeneity in included studies in terms of samples and methodology with a moderate to high risk of bias meaning caution is required when interpreting findings. CONCLUSIONS: The majority of parents want information on SUDEP despite finding the information distressing. Parents use SUDEP information to adjust their caregiving e.g. increasing monitoring and supervision or communicating relevant information about their child's epilepsy to others e.g. their child's school. Clinicians play a key role in identifying and supporting the re-appraisal of unhelpful or inaccurate beliefs around SUDEP and can mitigate distress associated with receiving information on SUDEP with clear and supportive communication. This review is registered on PROSPERO (Registration: CRD42024546466).