Understanding the psychosocial impact of Joint Hypermobility and Ehlers-Danlos Syndrome

Bennett, Sarah

Abstract

Abstract

Introduction: Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT) are heritable disorders affecting connective tissue. Existing research has predominately focused on biological features such as joint range of movement and pain, while less consideration has been given to psychosocial and behavioural factors.

Methods: This multiphase mixed-methods design explored the lived experience of adults with JHS and EDS in three studies. Firstly, a systematic review of the literature appraised and analysed ten papers using thematic synthesis. Secondly, semi-structured telephone interviews with a purposive sample of 17 adults (14 women, 3 men), considered participants’ lived experiences and the psychosocial, cognitive and behavioural impact of JHS/EDS-HT on their lives. In the final study, these results were mapped to the Theoretical Domains Framework and COM-B model in a behavioural analysis to identify potential behaviour change interventions. Intervention options were presented to focus group participants (n=9, all women) with JHS/EDS-HT to gain consensus on priorities in a modified nominal group technique (NGT).

Results: Results from the systematic review showed that people with JHS and EDS experience difficulties being understood by others in society, have limited participation in social activities, and often depend on their families for help. Similarly, results from interviews indicated a general lack of awareness of JHS/EDS-HT, fears regarding injuries or decline in ability, and a range of positive coping strategies including physiotherapy. The behavioural analysis prioritised a number of different behaviour change interventions.

Conclusion: The psychosocial impact of JHS/EDS-HT on adults is substantial, and there are a number of unmet areas of care and support for this population. Novel findings have been linked to potential intervention recommendations. The findings
are discussed and triangulated in relation to existing literature and implications for future research.

• Thesis Type: Thesis
• Deposit Date: Nov 11, 2019
• Publicly Available Date: May 4, 2020
• Keywords: hypermobility, Ehlers-Danlos, psychosocial,
• Public URL: https://uwe-repository.worktribe.com/output/4522950
• Award Date: May 4, 2020