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The lived experience of Joint Hypermobility and Ehlers-Danlos Syndromes: a systematic review and thematic synthesis

Bennett, Sarah E.; Walsh, Nicola; Moss, Tim; Palmer, Shea

Authors

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Sarah Bennett Sarah9.Bennett@uwe.ac.uk
Occasional Associate Lecturer - HAS AHP

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Nicola Walsh Nicola.Walsh@uwe.ac.uk
Professor in Knowledge Mobilisation & Muscul

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Shea Palmer Shea.Palmer@uwe.ac.uk
Professor in Allied Health Professions



Abstract

© 2019, © 2019 Informa UK Limited, trading as Taylor & Francis Group. Background: Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome (EDS) are heritable connective tissue disorders characterised by joint instability, pain, anxiety, depression and poor quality of life. However, peoples’ lived experiences are not well understood. Objective: To understand the lived experiences of people with JHS and EDS. Methods: A systematic review was conducted using PRISMA guidelines. Critical appraisal and a thematic synthesis of participants’ lived experiences were conducted. Eight online databases were searched from 1990 to February 2018: AMED, CINAHL, EMBASE, MEDLINE, PubMed, PsychINFO, SPORTDiscus and the Cochrane Library. Eligibility criteria were: (1) People with either JHS or EDS, clearly distinguished from generalised joint laxity; (2) Qualitative studies, or mixed qualitative and quantitative studies with qualitative data reported independently and (3) Published in English. Results: A total of nine studies were included. Five main themes were identified: (1) Lack of professional understanding; (2) Restricted life; (3) Social stigma; (4) Trying to ‘keep up’ and (5) Gaining control. The implications of these results are explored. Conclusions: Further qualitative research is required to examine the impact of JHS/EDS on a wider range of participants and in greater depth.

Citation

Bennett, S. E., Walsh, N., Moss, T., & Palmer, S. (2019). The lived experience of Joint Hypermobility and Ehlers-Danlos Syndromes: a systematic review and thematic synthesis. Physical Therapy Reviews, 24(1-2), 12-28. https://doi.org/10.1080/10833196.2019.1590674

Journal Article Type Article
Acceptance Date Feb 20, 2019
Online Publication Date Apr 18, 2019
Publication Date Mar 4, 2019
Publicly Available Date Mar 5, 2020
Journal Physical Therapy Reviews
Print ISSN 1083-3196
Electronic ISSN 1743-288X
Publisher Taylor & Francis
Peer Reviewed Peer Reviewed
Volume 24
Issue 1-2
Pages 12-28
DOI https://doi.org/10.1080/10833196.2019.1590674
Keywords hypermobility, Ehlers-Danlos, qualitative, systematic review, thematic synthesis, lived experience
Public URL https://uwe-repository.worktribe.com/output/848390
Publisher URL https://doi.org/10.1080/10833196.2019.1590674
Additional Information Additional Information : This is an Accepted Manuscript of an article published by Taylor & Francis in Physical Therapy Reviews on 18th April 2019, available online: https://doi.org/10.1080/10833196.2019.1590674.

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