ArticleJournal of advanced nursing2026
The Illness Narratives of Children and Young People With Spinal Muscular Atrophy: A Scoping Review.
Article in Journal of advanced nursing, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- Letter to the Editor: What Kind of Support Do SMA Families Need?-Reflections Based on Caregiving Roles.Journal of advanced nursing · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
AIM(S): This review seeks to explore the illness narratives of children and young people focusing on their healthcare trajectories; the right to health; and the kind of stories told about them.
designThis scoping review adopts a narrative approach to analyse how the illness experience of Spinal Muscular Atrophy is represented in the literature, moving beyond biomedical descriptions to consider sociocultural and historical dimensions. We explore how global and local forces shape everyday life and therapeutic possibilities for people with this condition.
methodsFour online databases were used to identify papers published between 2014 and 2024 in English and Spanish. The analysis process was guided by the PAGER Framework.
resultsTwenty-one articles met the criteria for the review, mainly published in the Global North. Following organisation of Patterns, findings were categorised into three themes: (1) Parents as storytellers of young people's life trajectories; (2) Tropes about everyday life with Spinal Muscular Atrophy; and (3) The right to health as a narrative terrain. Findings show that access to medical treatment, information, and healthcare coverage poses difficulties when navigating the healthcare system with little institutional support.
conclusionsThe voices of individuals with Spinal Muscular Atrophy are rarely reported, often represented by their parents. There are opportunities to develop strategies that enhance the experiences of children and young people when seeking care, which should have a rights-based, intersectional, and family-centred approach. IMPACT: This review highlights the need to listen to children and young people's voices, offer support to caregivers, and further explore the right to health in the Global South. PATIENT OR PUBLIC CONTRIBUTION: 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.
Indexed as
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What Socratic holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.