The Illness Narratives of Children and Young People With Spinal Muscular Atrophy: A Scoping Review.
Marcela González-Agüero, Constanza Quezada, Valentina Turén and 4 others
PMID 41439331WHAT IT FOUND
Parents and caregivers tell most stories about children with SMA; children's own voices are rare.
Clinicians should ask patients directly, not rely only on parents, and address information, coordination, and treatment-access barriers.
Key findings
01Parents and caregivers are the main storytellers in the reviewed studies, and children's own voices are absent or rare.
02Families reported barriers to clear information, care coordination, and access to high-cost SMA treatments.
03The reviewed literature is concentrated in the Global North and gives limited attention to young people's everyday lives and mental health outside clinical settings.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The review included only 21 studies and searched four databases, so relevant studies in other languages or databases may be missing. Most studies were from Europe or North America, so the findings may not represent SMA experiences in the Global South. Parents and caregivers told most stories, and children's voices were rarely or never included, so the patient perspective is limited. The review mapped experiences rather than testing interventions, so it cannot show whether any communication or care-coordination method improves outcomes. Most narratives were set in clinical spaces, so everyday life outside clinics is underrepresented.
Declared interests
This work was supported by ANID, Fondecyt de Iniciación, Grant ID 11240547. The funder is named as Agencia Nacional de Investigación y Desarrollo. The authors declare no conflicts of interest.
The easy way to misread this
Do not read these narrative themes as proof that a particular communication or care-coordination method improves outcomes. The review mapped experiences from included studies, mostly parent accounts, and did not test interventions.