Parents' dilemma: A therapeutic decision for children with spinal muscular atrophy (SMA) type 1.

Sophie Boursange, Marco Araneda,Caroline Stalens,Isabelle Desguerre,Christine Barnerias,Marie-Christine Nougues,Arnaud Isapof,Susana Quijano-Roy,Nadia Blu Genestine,Laetitia Ouillade,Maripaz Martinez Jalilie,Claudia Castiglioni,Odile Boespflug-Tanguy,Marcela Gargiulo

Frontiers in pediatrics（2022）

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摘要

Hesitating before making a decision did not predispose parents to depression and anxiety. The narratives suggest that the parents faced a dilemma regarding their child's health in an urgent context. The decision was not final, and parents will continue to think about it throughout the care process.

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关键词

SMAPAR Study,burden,caregivers,dilemmatic decisions,innovative therapies,palliative care,parents,spinal amyotrophy type 1

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