Journal
DISABILITY AND REHABILITATION
Volume 41, Issue 4, Pages 445-455Publisher
TAYLOR & FRANCIS LTD
DOI: 10.1080/09638288.2017.1398278
Keywords
Joint Hypermobility syndrome; Ehlers-Danlos syndrome - hypermobility type; exercise beliefs; exercise behaviour; physiotherapy; physiotherapy
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Funding
- Musculoskeletal Association of Chartered Physiotherapists (MACP)
- Hypermobility Syndromes Association (HMSA)
- Ehlers-Danlos Support UK (EDS Support UK)
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Purpose: To explore exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers-Danlos syndrome - hypermobility type and to explore patient experiences of physiotherapy. Methods: A cross sectional questionnaire survey design was used to collect quantitative and qualitative data from adult members of the Hypermobility Syndromes Association and Ehlers-Danlos Syndrome Support UK. Descriptive and inferential statistics were used to analyse the data. Qualitative data was analysed thematically. Results: 946 questionnaires were returned and analysed. Participants who received exercise advice from a physiotherapist were 1.75 more likely to report high volumes of weekly exercise (odds ratio [OR] = 1.75, 95% confidence interval [CI] = 1.30-2.36, p < 0.001) than those with no advice. Participants who believed that exercise is important for long-term management were 2.76 times more likely to report a high volume of weekly exercise compared to the participants who did not hold this belief (OR = 2.76, 95% CI = 1.38-5.50, p = 0.004). Three themes emerged regarding experience of physiotherapy; physiotherapist as a partner, communication - knowledge, experience and safety. Conclusion: Pain, fatigue and fear are common barriers to exercise. Advice from a physiotherapist and beliefs about the benefits of exercise influenced the reported exercise behaviours of individuals with Ehlers-Danlos syndrome - hypermobility type in this survey.
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