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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.

Journal Article Type Article
Publication Date Mar 4, 2019
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
APA6 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
DOI https://doi.org/10.1080/10833196.2019.1590674
Keywords hypermobility, Ehlers-Danlos, qualitative, systematic review, thematic synthesis, lived experience
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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