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

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

Research output: Contribution to journalArticlepeer-review

17 Citations (Scopus)
230 Downloads (Pure)

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.
Original languageEnglish
Pages (from-to)12-28
Number of pages17
JournalPhysical Therapy Reviews
Volume24
Issue number1-2
Early online date18 Apr 2019
DOIs
Publication statusPublished - 2019
Externally publishedYes

Keywords

  • Hypermobility
  • Ehlers-Danlos
  • Qualitative

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