“Suddenly we have hope that there is a future”: two families’ narratives when a child with spinal muscular atrophy receives a new drug

“Suddenly we have hope that there is a future”: two families’ narratives when a child with spinal muscular atrophy receives a new drug

Purpose: This study aims to explore negotiations of hope in everyday life for families where a child with spinal muscular atrophy (SMA) has received a new drug treatment. Methods: A narrative design was used, drawing on interviews and participant observations in two families with children with SMA,...

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Bibliographic Details
Main Authors: Elin Hjorth, Malin Lövgren, Ulrika Kreicbergs, Thomas Sejersen, Eric Asaba
Format: Article
Language:English
Published: Taylor & Francis Group 2021-01-01
Series:International Journal of Qualitative Studies on Health & Well-Being
Subjects:
spinal muscular atrophy
neuromuscular disease
families
narrative inquiry
hope
resilience
Online Access:http://dx.doi.org/10.1080/17482631.2021.1904722

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