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

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.

Keywords:

• Hypermobility
• Ehlers-Danlos
• qualitative
• systematic review
• thematic synthesis
• lived experience

Acknowledgments

Many thanks to our Patient Research Partner Susan Harris, for her review and endorsement of the findings of this systematic review and thematic synthesis, from her perspective and experiences as someone with JHS.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Sarah E. Bennett

Sarah Bennett is a PhD student in the Faculty of Health and Applied Sciences at the University of the West of England, Bristol. Sarah has a particular interest in understanding the psychosocial impact of Joint Hypermobility and Ehlers-Danlos Syndromes.

Nicola Walsh

Nicola Walsh is Professor of Knowledge Mobilisation and Musculoskeletal Health at the University of the West of England, Bristol. Nicola's research focusses on exercise and self-management of Musculoskeletal conditions. She is currently chief investigator on FRONTIER, looking at First Contact Physiotherapy in primary care.

Tim Moss

Tim Moss is health psychologist and Associate Professor at the University of the West of England (Bristol). His interests lie in understanding the psychological predictors and consequences of long-term conditions, in particular when they are appearance altering. He is also director of postgraduate research studies in the Faculty of Health and Applied Sciences at UWE Bristol, managing the recruitments, supervision, and assessment of doctoral students in many different academic areas.

Shea Palmer

Shea Palmer is a physiotherapist currently employed at the University of the West of England Bristol as Professor of Musculoskeletal Rehabilitation. His main research interests are related to the assessment and management of musculoskeletal disorders, with a particular interest in joint hypermobility.