Living with hypermobile Ehlers-Danlos syndrome (hEDS) from the perspective of children aged 5-11 years

Sheila Billings & Professor T. Watson, University of Hertfordshire

Recruitment poster Adult participant information sheet Child aged 5-7 information sheet Child aged 8-11 information sheet

This research seeks to understand how children, aged 5-11 years, with hypermobile Ehlers-Danlos syndrome (hEDS),  perceive living with the condition and to explore the experiences of their parent/guardian, in looking after a child with hEDS.

Participants will be provided with a camera to take photographs which help them talk about living with the condition (a technique called photo elicitation interviews). The researcher will then talk to the children and their parent/guardian about their photographs (via video call) to gain information about their perceptions of living with hEDS.  Photographs and interview transcriptions will be anonymised.

To take part in the study:

1. The children must have a previously confirmed diagnosis of a hEDS or condition with related diagnostic criteria to hEDS (e.g. joint hypermobility syndrome (JHS), hypermobility spectrum disorder (HSD), EDS-hypermobile type (EDS-HT), EDS Type III). The diagnosis can be in a letter or a report following a consultation unrelated to this research.
2. hEDS (or a related condition, as above) must be their sole diagnosis
3. Children must be aged 5-11 years
4. Adults must be an adult who cares for the child and who has parental responsibilities for the child
5. Participants will need to speak and understand English. They will need to be able to read English at an age appropriate level. There is no budget available for interpreters.

6. Participants will need to have reliable access to the internet and access to a laptop or iPad/tablet, that can be supported in a stable position.


Please contact the researcher for more information or to take part.

This study has been approved by The University of Hertfordshire Health, Science, Engineering and Technology Ethics Committee with Delegated Authority. UH protocol number: HSK/PGR/UH/03967. 

Start date: 18/02/2020

Finish date: 31/12/2020

Should you have any queries about this study please use the details below:

Sheila Billings

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