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

Hjorth, Elin ; Lövgren, Malin ; Kreicbergs, Ulrika ; Sejersen, Thomas LU and Asaba, Eric LU (2021) In International Journal of Qualitative Studies on Health and Well-being 16(1).
Abstract

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... (More)

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.

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author
; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
families, hope, narrative inquiry, neuromuscular disease, resilience, Spinal muscular atrophy
in
International Journal of Qualitative Studies on Health and Well-being
volume
16
issue
1
article number
1904722
publisher
Taylor & Francis
external identifiers
  • pmid:33789523
  • scopus:85103743935
ISSN
1748-2623
DOI
10.1080/17482631.2021.1904722
language
English
LU publication?
yes
id
38903bb4-e5a2-4cf7-8d75-49ddd73b4435
date added to LUP
2021-04-20 08:58:37
date last changed
2024-03-23 03:28:17
@article{38903bb4-e5a2-4cf7-8d75-49ddd73b4435,
  abstract     = {{<p>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.</p>}},
  author       = {{Hjorth, Elin and Lövgren, Malin and Kreicbergs, Ulrika and Sejersen, Thomas and Asaba, Eric}},
  issn         = {{1748-2623}},
  keywords     = {{families; hope; narrative inquiry; neuromuscular disease; resilience; Spinal muscular atrophy}},
  language     = {{eng}},
  number       = {{1}},
  publisher    = {{Taylor & Francis}},
  series       = {{International Journal of Qualitative Studies on Health and Well-being}},
  title        = {{“Suddenly we have hope that there is a future” : two families’ narratives when a child with spinal muscular atrophy receives a new drug}},
  url          = {{http://dx.doi.org/10.1080/17482631.2021.1904722}},
  doi          = {{10.1080/17482631.2021.1904722}},
  volume       = {{16}},
  year         = {{2021}},
}