Parents' Experiences of Children's Healthcare for Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)

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 health care systems, and (4) diagnostic labels are meaningful. Findings suggest that achieving person-centered care may broadly improve health care for families with hEDS/HSD
Original languageEnglish
Pages (from-to)37-61
Number of pages25
JournalChildren's Health Care
Volume51
Issue number1
Early online date25 Sep 2021
DOIs
Publication statusPublished - 2 Jan 2022

Bibliographical note

© 2021 The Author(s). Published with license by Taylor & Francis Group, LLC.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Keywords

  • Ehlers-Danlos syndrome
  • family-centered care
  • health care
  • hypermobility spectrum disorders
  • parent professional collaboration
  • Developmental and Educational Psychology
  • Clinical Psychology
  • Pediatrics, Perinatology, and Child Health

ASJC Scopus subject areas

  • Clinical Psychology
  • Developmental and Educational Psychology
  • Pediatrics, Perinatology, and Child Health

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