“Suddenly we have hope that there is a future” : two families’ narratives when a child with spinal muscular atrophy receives a new drug
(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
- Hjorth, Elin ; Lövgren, Malin ; Kreicbergs, Ulrika ; Sejersen, Thomas LU and Asaba, Eric LU
- organization
- publishing date
- 2021
- 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
- 2025-01-13 07:04:14
@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}},
}