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"They don't know how to live with a child with these conditions, they can't understand...": The lived experiences of parenting a child with a genetic neurodevelopmental disorder.

2024-07-24 genetic and genomic medicine Title + abstract only
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BackgroundA genetic neurodevelopmental diagnosis (GND) impacts all aspects of a child and familys life. GNDs are rare; most have limited natural history data. We aimed to understand parents experiences around data acquisition about their childs GNDs which can help inform clinical practice. Design and participantsThis analysis is part of the UK multicentre GenROC study. We conducted 17 semi-structured interviews with parents of children with GNDs (aged 0-15 years). Data were analysed following t...

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