"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, types 1-2, to situate family experiences of hope in everyday life. Narrative analysis was used on the data.Results: Results are presented as stories, with details about situations and contexts, to illustrate how hope was used by families to reconstruct their own family narratives.Conclusions: Hope was negotiated and struggled with in different ways by different family members, but contributed to each person's own way of dealing with the disease and outlook for the future.