Orphanet Journal of Rare Diseases · 4 authors, 2 centres
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This qualitative interview study with 21 caregivers of children with spinal muscular atrophy type I or II identified seven key areas influencing care coordination, finding that caregivers often bear primary responsibility for coordination due to sparse local expertise and unstructured existing mechanisms.
The study used a qualitative interview analysis with 21 caregivers of children with SMA I or II to explore their experiences with care coordination. Caregivers reported that coordination is primarily their responsibility, often hampered by limited local healthcare providers with SMA expertise, long travel distances to specialized centers, and the dynamic nature of the child's needs. Caregivers of older children with longer disease duration reported increased expertise and more consolidated care networks. All 21 caregivers expressed a need for more coordination support, particularly shortly after diagnosis.
