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

Lauren Bell; Gemma Pearce

doi:10.1080/02739615.2021.1960165

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

Lauren Bell, Gemma Pearce

Research output: Contribution to journal › Article › peer-review

8 Citations (Scopus)

157 Downloads (Pure)

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 language	English
Pages (from-to)	37-61
Number of pages	25
Journal	Children's Health Care
Volume	51
Issue number	1
Early online date	25 Sept 2021
DOIs	https://doi.org/10.1080/02739615.2021.1960165
Publication status	Published - 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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10.1080/02739615.2021.1960165Licence: CC BY

Bell_Pearce_Parents'_Experiences A4Final published version, 286 KBLicence: CC BY

Cite this

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

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{\textquoteright}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",

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

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

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