Parents’ experiences of children’s health care for hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders

Hypermobile Ehlers–Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) are underdiagnosed hereditary connective tissue requiring health care across specialties. Using mixed methods, we explored how parents have experienced children’s for hEDS/HSD. Surveyed (N = 297) reported varying experiences, though professional understanding was negatively appraised by most parents. Themes identified from interviews (n 13) were: (1) awareness fundamental, (2) the importance of therapeutic relationship, (3) limitations healthcare systems, (4) diagnostic labels meaningful. Findings suggest that achieving person-centered may broadly improve families with