Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory
Open accessAbstract
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: = 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 rehabilitationPatients 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.
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hEDS and HSD require the same pattern of multidisciplinary intervention.
“require the same pattern of multidisciplinary intervention [23, 24]”
From Are patients with hypermobile Ehlers–Danlos syndrome or hypermobility spectrum disorder so different? (2021) · cites this paper as [24]
To improve, treat and prevent musculoskeletal manifestations of joint hypermobility, education, active participation and active physical therapy intervention are recommended.
“Generally, to improve, treat and prevent musculoskeletal manifestations of joint hypermobility, the facets of education, active participation and active physical therapy intervention are recommended. [23, 24, 40–43].”
From Are patients with hypermobile Ehlers–Danlos syndrome or hypermobility spectrum disorder so different? (2021) · cites this paper as [24]
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- Authors
- Bennett, S. E., Walsh, N., Moss, T., & Palmer, S.
- Affiliations
- University of the West of England (GB)
- Department of Health and Social Sciences, Centre for Appearance Research, University of the West of England, Bristol, UK
- Corresponding author
- Bennett, Sarah E.
- Venue
- Disability and Rehabilitation
- Publisher
- Informa UK Limited
- Published
- 2021-06-08
- Volume
- 44
- Issue
- 18
- Pages
- 5231-5240
- ISSN
- 0963-8288 (ISSN-L)
- 1464-5165
- OpenAlex
- W3171816027
- Cited by
- 16
- References
- 50
- Citations by year
- 2025: 6 · 2024: 3 · 2023: 4 · 2022: 2 · 2021: 1
- FWCI
- 1.41
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Disability and Rehabilitation (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Bristol Research (University of Bristol) (publishedVersion, cc-by)
- ORCA Online Research @Cardiff (Cardiff University) (acceptedVersion)
- Explore Bristol Research (submittedVersion, cc-by)
- UWE Research Repository (UWE Bristol) (submittedVersion, cc-by)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Social Sciences › Psychology › Applied Psychology › Behavioral Health and Interventions
- Keywords
- hypermobility spectrum disorders, hypermobile Ehlers-Danlos syndrome, self-management interventions, behaviour change techniques, connective tissue diseases, joint instability, patient education, activity pacing, assertiveness training, environmental restructuring, enablement, behavioral modeling, psychosocial impact, occupational therapy, psychological support, co-design, women
- MeSH terms
- Self-Management, Ehlers-Danlos Syndrome, Female, Humans, Joint Instability
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