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"Suddenly we have h...
"Suddenly we have hope that there is a future" : Two families’ narratives when a child with spinal muscular atrophy receives a new effective drug
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- Hjorth, Elin (författare)
- Ersta Sköndal Bräcke högskola,Palliativt forskningscentrum, PFC,Ersta Sköndal Bräcke University College
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- Lovgren, Malin, 1980- (författare)
- Karolinska Institutet,Karolinska Institute,Ersta Sköndal Bräcke högskola,Palliativt forskningscentrum, PFC,Karolinska institutet,Karolinska University Hospital,Ersta Sköndal Bräcke University College
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- Kreicbergs, Ulrika (författare)
- Karolinska Institutet,Karolinska Institute,Ersta Sköndal Bräcke högskola,Palliativt forskningscentrum, PFC,Karolinska institutet,Karolinska University Hospital,Ersta Sköndal Bräcke University College
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- Sejersen, Thomas (författare)
- Karolinska Institutet,Karolinska Institute,Karolinska University Hospital,Karolinska institutet
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- Asaba, Eric (författare)
- Karolinska Institutet,Karolinska Institute,Lund University,Lunds universitet,Hållbar vardag och hälsa i ett livsperspektiv,Forskargrupper vid Lunds universitet,Sustainable occupations and health in a life course perspective,Lund University Research Groups,Stockholms Sjukhem Foundation,Karolinska institutet; Stiftelsen Stockholms sjukhem; Lunds universitet
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(creator_code:org_t)
- 2021-03-31
- 2021
- Engelska.
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Informa UK Limited. - 1748-2623 .- 1748-2631. ; 16:1
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https://doi.org/10.1...
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Abstract
Ämnesord
Stäng
- 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.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Omvårdnad (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Public Health, Global Health, Social Medicine and Epidemiology (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Neurologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Neurology (hsv//eng)
Nyckelord
- Spinal muscular atrophy
- Families
- Hope
- Narrative inquiry
- Neuromuscular disease
- Resilience
- families
- hope
- narrative inquiry
- neuromuscular disease
- resilience
- Spinal muscular atrophy
Publikations- och innehållstyp
- ref (ämneskategori)
- art (ämneskategori)
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