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

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

Abstract

Purpose: 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. Materials and methods: 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). Results: Possible BCTs incorporated: Education: Incorporating self-help strategies, education to improve their knowledge of HSD/hEDS, and how to judge information about HSD/hEDS. Training: In activity pacing, assertiveness and communication skills, plus what to expect during pregnancy, when symptoms can worsen. Environmental restructuring and enablement: Support from occupational therapists to maintain independence at work and home. Modelled behaviour: That illustrates how other people with HSD/hEDS have coped with the psychosocial impact. Conclusions: 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 of knowledge about HSD/hEDS. Future research should evaluate which intervention options would be most acceptable and feasible.Implications for rehabilitation Patients with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome can be active partners in the co-design of behaviour change interventions. Behaviour change interventions should target psychological support and patient education, particularly patient information. Additional behaviour change interventions included environmental restructuring and enablement; adaptations to participants’ environment with input from occupational therapy. Participants were keen to suggest opportunities for behavioural modelling; positive fist-person modelling narratives, written by those with HSD/hEDS, which addressed how they coped with the psychosocial impact of their condition.

• Journal Article Type: Article
• Acceptance Date: May 19, 2021
• Online Publication Date: Jun 8, 2021
• Publication Date: 2022-10
• Deposit Date: Jun 8, 2021
• Publicly Available Date: Jun 10, 2021
• Journal: Disability and Rehabilitation
• Print ISSN: 0963-8288
• Electronic ISSN: 1464-5165
• Publisher: Taylor & Francis
• Peer Reviewed: Peer Reviewed
• Volume: 44
• Issue: 18
• Pages: 5231-5240
• DOI: https://doi.org/10.1080/09638288.2021.1933618
• Keywords: Hypermobility, Ehlers-Danlos syndromes, self-management, behaviour change wheel, Rehabilitation
• Public URL: https://uwe-repository.worktribe.com/output/7451734
• Publisher URL: https://www.tandfonline.com/doi/full/10.1080/09638288.2021.1933618
• Additional Information: Peer Review Statement: The publishing and review policy for this title is described in its Aims & Scope.; Aim & Scope: http://www.tandfonline.com/action/journalInformation?show=aimsScope&journalCode=idre20; Received: 2020-12-04; Revised: 2021-04-26; Accepted: 2021-05-19; Published: 2021-06-08