Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory.

Disability and Rehabilitation
Sarah E BennettShea Palmer

Abstract

Hypermobility Spectrum Disorders (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS) are heritable connective tissue disorders associated with joint instability and pain, but with scant guidance for supporting patients. The aim was to determine recommendations for an HSD/hEDS self-management intervention. Barriers to self-management were mapped onto the Theoretical Domains Framework (TDF) and Capability, Opportunity, Motivation-Behaviour (COM-B) model in a behavioural analysis. A modified Nominal Group Technique was used to prioritise behaviour change technique (BCT) interventions (n = 9 women). Possible BCTs incorporated. Incorporating self-help strategies, education to improve their knowledge of HSD/hEDS, and how to judge information about HSD/hEDS. In activity pacing, assertiveness and communication skills, plus what to expect during pregnancy, when symptoms can worsen. Support from occupational therapists to maintain independence at work and home. That illustrates how other people with HSD/hEDS have coped with the psychosocial impact. This study is the first to apply theoretically-informed approaches to the management of HSD/hEDS. Participants indicated poor access to psychological support, occupational therapy and a lack o...Continue Reading

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Citations

Aug 17, 2021·Rheumatology International·Bérengère Aubry-RozierCharles Benaim

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