Parents’ Experiences of Children’s Healthcare for Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Project Summary

Experiences of healthcare play an important role in people’s wellbeing and how people understand, live with, and manage their health. Previous research has explored adults’ experiences of living with hEDS/HDS and found that improvements to adult healthcare, including increased awareness and quicker diagnoses, would be beneficial. The same research in the experiences of children however, is less comprehensive. Kay Julier from EDS UK highlighted this need to Dr Gemma Pearce. As a result, Lauren Purdy, who was interested in Children’s healthcare, chose to focus research on this topic for her Masters Research at Coventry University supervised by Gemma.

The aim of this project was to explore parents’ experiences of healthcare for their children, either with diagnosed or suspected hEDS/HSD in the UK. The inclusion of suspected hEDS/HSD cases was intended to recognise the lengthy journey towards diagnosis.

An initial survey was conducted to understand parents’ experiences and evaluations of healthcare, which was completed by 297 parents. Follow-up interviews with 13 of these parents were then conducted, including those who reported positive, negative, and mixed experiences in the survey. We would like to acknowledge all who took part, thank you!

The project has now been written up and is currently undergoing review and we will update this project page with the findings once published. We hope this project will provide an insight into how families may have experienced healthcare, and how families and professionals can collaborate in supporting children with hEDS/HSD.

We would like to thank Kay Julier from EDS UK for working with us to develop the research idea, EDS UK and HMSA for helping to recruit people to take part, and Dr Emma Reinhold for testing and providing feedback on the survey used for this study.

Project Goal

To explore parents’ experiences of healthcare for their children with diagnosed or suspected hEDS/HSD in the UK.


The Project Team

Lauren Purdy

Research Assistant

Lauren works as a Research Assistant at Coventry University. She previously completed an MSc in Health Psychology, which included hEDS/HSD related research.

Gemma Pearce

Dr. Gemma Pearce

hEDStogether lead

Gemma is the lead for the hEDS together website, involved in all of the featured research projects and has hEDS/HSD herself.

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