A qualitative study exploring participants' feelings about an online pilates program designed for people with hypermobility disorders

Leslie N Russek; Jeannie Di Bon; Jane Simmonds; Catherine S Nation; Cheyenne Vivlamore Zion Higgins; Tiffany Jandrew

doi:10.1016/j.jbmt.2025.03.002

A qualitative study exploring participants' feelings about an online pilates program designed for people with hypermobility disorders

J Bodyw Mov Ther. 2025 Jun:42:1148-1158. doi: 10.1016/j.jbmt.2025.03.002. Epub 2025 Mar 11.

Authors

Leslie N Russek¹, Jeannie Di Bon², Jane Simmonds³, Catherine S Nation⁴, Cheyenne Vivlamore Zion Higgins⁵, Tiffany Jandrew⁶

Affiliations

¹ Clarkson University, St. Lawrence Health System. Potsdam, NY, USA. Electronic address: Lrussek@clarkson.edu.
² The Zebra Club, London, UK. Electronic address: jeannie@jeanniedibon.com.
³ Great Ormond Street Institute of Child Health, University College London, UK; London Hypermobility Network, Central Health Pysiotherapy, London, UK. Electronic address: jane.simmonds@ucl.ac.uk.
⁴ The Zebra Club, London, UK. Electronic address: katie@thezebra.club.
⁵ Higgins Physical Therapy, Oswego, NY, USA. Electronic address: VZHigginsDPT@gmail.com.
⁶ Maple City Physical Therapy, Hornell, NY, USA. Electronic address: Tjandrew.mcpt@gmail.com.

PMID: 40325650
DOI: 10.1016/j.jbmt.2025.03.002

Abstract

Background: and Purpose: Exercise is commonly recommended for management of the hypermobility disorders hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (hEDS/HSD). However, a variety of barriers exist, including access to knowledgeable providers, fear of injury, pain and fatigue. The purpose of this study was to explore factors that influence people with hEDS/HSD using an online Pilates program designed for hEDS/HSD and their perceived outcomes of such a program.

Methods: This study used a qualitative grounded theory thematic analysis approach based on written survey comments from participants in an 8-week online Pilates program designed specifically for people with hypermobility disorders. Responses were analysed thematically for both facilitators and barriers to participation, and benefits and drawbacks as outcomes.

Results: The findings revealed four themes contributing to facilitators and barriers: Physical, Mind-Body, Instruction/Instructor, and Accessibility. Exercises designed for people with hypermobility, feelings of safety, knowledgeable instructor, and convenience were key facilitators. Unrelated illness, injury or pain, fear of injury, and difficulty accommodating a range of ability levels were key barriers. We found two themes for outcomes (benefits and drawbacks): Physical and Mind-Body. Key benefits included both physical and psychological improvements, while drawbacks included pain, fatigue, and feeling discouraged. Based on these findings, we propose elements of future online exercise programs to enhance engagement with this population.

Conclusions: This study describes how people with hypermobility disorders feel about an online Pilates program designed for hypermobility, and proposes how future online exercise programs might best serve this population.

Keywords: Exercise; Hypermobile ehlers-danlos syndrome; Hypermobility spectrum disorders; Pilates; Qualitative research.

MeSH terms

Adult
Ehlers-Danlos Syndrome* / psychology
Ehlers-Danlos Syndrome* / rehabilitation
Ehlers-Danlos Syndrome* / therapy
Exercise Movement Techniques* / methods
Exercise Movement Techniques* / psychology
Female
Humans
Joint Instability* / psychology
Joint Instability* / rehabilitation
Joint Instability* / therapy
Male
Middle Aged
Qualitative Research
Young Adult