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

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.PMID:34101520 | DOI:10.1080/09638288.2021.1933618

Source: Disability and Rehabilitation - June 8, 2021 Category: Rehabilitation Authors: Sarah E Bennett Nicola Walsh Tim Moss Shea Palmer Source Type: research