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

Authors :
Bell, Lauren
Pearce, Gemma
Source :
Children's Health Care. Jan-Mar 2022, Vol. 51 Issue 1, p37-61. 25p. 3 Charts.
Publication Year :
2022

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. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
02739615
Volume :
51
Issue :
1
Database :
Academic Search Index
Journal :
Children's Health Care
Publication Type :
Academic Journal
Accession number :
154342582
Full Text :
https://doi.org/10.1080/02739615.2021.1960165