The lived experience of Joint Hypermobility and Ehlers-Danlos Syndromes: a systematic review and thematic synthesis. (4th March 2019)

• Record Type: Journal Article
• Authors: Bennett, Sarah E.; Walsh, Nicola; Moss, Tim; Palmer, Shea
• Is Part Of: Physical therapy reviews. Volume 24:Number 1/2(2019)
• Page Start: 12
• Page End: 28
• Publication Date: 2019-03-04
• Subjects: Hypermobility -- Ehlers-Danlos -- qualitative -- systematic review -- thematic synthesis -- lived experience; Physical therapy -- Periodicals; 615.8205
• DOI: 10.1080/10833196.2019.1590674
• Languages: English
• ISSNs: 1083-3196

Abstract

Abstract: 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.