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

Abstract

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