THESE POLLS ARE NOW CLOSED
THANK YOU TO EVERYONE WHO TOOK PART! BELOW IS THE ORIGINAL POST:
As you may or may not know, we (@GemmaSPearce , @DrEReinhold and I, @SallyPezaro) have recently won funding to do further research and professional & public engagement on the topic of
#hypermobile #EhlersDanlosSyndrome & childbearing.
This will allow us to:
- Conduct two international surveys (one with women with hypermobile Ehlers-Danlos syndrome (hEDS) or Hypermobile Spectrum Disorder (HSD) about childbearing, and the other with maternity staff)
- Spend some time with relevant people/organisations to develop ideas and co-produce great things together
- Host a public engagement event
But first we need your help!
We are currently designing how the two international surveys will look and what they will ask our participants about. Whilst we have largely relied on the current evidence base to develop the surveys so far, we would also like to involve YOU (the public) in telling us what topics we should prioritise.
Please indicate which topics matter most to you via the following short polls;
(bear in mind that the more answers you select, the longer our final survey will take to complete…)
Which tools would be most useful in helping maternity staff support childbearing women with hEDS/HSD?
What should we ask maternity staff about hEDS/HSD in the context of childbearing?
What complications should we ask childbearing women with hEDS/HSD about?
Many thanks for your responses and suggestions. Please share this blog post far and wide so that we can include as many voices as possible in the design of this work!
We will be using all responses submitted before the end of the 24th of February 2019.
If you would like to follow the progress of work going forward..
Until next time…Look after yourselves and each other 💚💙💜❤