The Illness Narratives of Children and Young People With Spinal Muscular Atrophy: A Scoping Review
The interpretation of the findings was enriched by the involvement of patients, who participated as advisors for the research team. Their contributions ensured the research remained aligned with concerns and priorities informed by lived experience of the disease.
Authors
- Valentina Turén (ORCID: https://orcid.org/0000-0003-1752-8517)
- Constanza Quezada (ORCID: https://orcid.org/0000-0002-6202-4150)
- Marcela González‐Agüero (ORCID: https://orcid.org/0000-0002-0738-4399)
- Caroline Bradbury‐Jones (ORCID: https://orcid.org/0000-0002-5237-6777)
- Martina De Filippi
- Julie Taylor
- Josefa Camelio
Institutions
- Birmingham City University (GB)
- Pontificia Universidad Católica de Chile (CL)
- Fundación Arturo López Pérez (CL)
- University of Birmingham (GB)
Publication Details
- Journal
- Journal of Advanced Nursing
- Published
- 2025-12-24
- DOI
- https://doi.org/10.1111/jan.70468
- Citations
- 1
- Primary Topic
- Neurogenetic and Muscular Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 1.63
Funders
- Pontificia Universidad Católica de Chile
- Agencia Nacional de Investigación y Desarrollo