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 identified that professional awareness and journeys towards diagnosis require improvements. The same research for children, however, is less comprehensive. This was recognised by Kay Julier from EDS UK, and Dr Gemma Pearce, which led to the development of a research plan with Lauren Bell, then an MSc student.

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

First, a survey was completed by 297 parents who reported their experiences with different aspects of healthcare. In addition, 13 of these parents were interviewed so that we could understand in more detail the impact and nature of different positive, negative, and mixed healthcare experiences.

Whilst parents described diverse experiences, overall findings indicated that children’s healthcare for hEDS/HSD requires improvements. Some key themes from the study were:

1. Awareness and understanding are fundamental
2. The importance of the therapeutic relationship
3. Limitations of health care system
4. Diagnostic labels are meaningful

We hope this study provides important insight into how families may experience or have been affected by children’s healthcare for hEDS/HSD, and we highlight key areas for future research and development.

This study has now been published in the journal Children’s Health Care, which you can read here. You can also read the article here on the hEDS Together website, or read more about the development and findings of this study in this blog.