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

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
• Acceptance Date: Feb 20, 2019
• Online Publication Date: Apr 18, 2019
• Publication Date: Mar 4, 2019
• Deposit 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.
• Contract Date: Mar 4, 2019