1

THE VOTES ARE IN! What do the results tell us about future research on childbearing with hypermobile Ehlers-Danlos syndrome?

Image result for the results are in

We asked the public to complete three short polls to inform the design of future research on childbearing with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD)…These polls received over 4000 votes!.. THANK YOU!!!

So what did you tell us?

flat-lay photography of four person holding mobile devices

What complications should we ask childbearing women with hEDS/HSD about?

Answer Votes Percent
Infertility 100 6%
Miscarriage 151 8%
Premature labours/births 180 10%
Abnormal length of labours/births 173 10%
Poor anaesthetic coverage 213 12%
Hemorrhage/excess bleeding 194 11%
Injury/dislocation 224 12%
Abnormal scar formation 161 9%
Tissue trauma/tearing 205 11%
Changes in hEDS/HSD symptoms 178 10%
Other: 27 2%
Other Answer Votes
All 1
Pessery ring use/Preterm labour/ support pre L&D 1
stargazing/breech births (we can move the babies inside us easily!) 1
hyperemisis 1
All of them in order to be able to develop a comprehensive set of guidelines 1
Unspeakable pain, SIJ separation, spinal blocks 1
slow healing 1
Be aware some EDS people give birth so easily nobody believes they are in labour 1
Impact of medication 1
Hyperemesis 1
Placental abruption 1
Other secondary conditions like PoTS, diverticulit 1
eclampsia/ pre-eclampsia 1
Listening and supporting any knock on affect and recovery etc. 1
absorbable sutures not working and requiring non-absorbable sutures 1
Particularly SI joint. 1
Effect of pregnancy on bladder, bowel and digestive function 1
High level of pain threshold in hEDS patients so their sore will really be agony 1
Abnormal loosening of collagen causing pain and weakness during pregnancy 1
Prolapse 1
Cardiac concerns 1
Mast cell issues, allergies, sensitivities and intolerances, dysautonomic issues 1
Pneumothorax in newborns 1
Recovery after birth 1
POTS related symptoms, management of low BP, need for support after birth 1
PGP / SPD earlier in pregnancy with hEds 1
Fast labour and unstable pelvis forever after…

 

Which tools would be most useful in helping maternity staff support childbearing women with hEDS/HSD?

Answer Votes Percent
Online learning module 124 12%
Toolkit 113 11%
Infographic 67 7%
Decision-making tree 92 9%
University accredited module 105 10%
Blog series 20 2%
Video series 56 6%
Clinical guidelines 186 18%
Leaflets available in maternity units 150 15%
Knowledge awareness summit 91 9%
Other: 12 1%
Other Answer Votes
Increased Patient and staff liason 1
Info pack should be given to mum when jhm noticed at birth 1
Patient stories; mythbuster facts: too many tacit assumptions in healthcare! 1
Please look at online communities formed around nerve injuries in childbirth. 1
Knowledge of the condition 1
Physicians/OB/GYN/Midwifery CME education toolkit 1
Staff have a lecture from you to educate them! 1
Diagnosis if previously undiagnosed 1
RCOG greentop guidelines on EDS would be amaze-balls! 1
something like spend time with people who have eds, maybe in a support group 1
Patient education 1
Mandatory training for each midwife 1

 

What should we ask maternity staff about hEDS/HSD in the context of childbearing?

Answer Votes Percent
Awareness of hEDS/HSD 137 10%
Knowledge of hEDS/HSD 189 14%
Knowledge of related conditions (e.g. POTS) 178 13%
Knowledge of hEDS/HSD diagnosis 89 7%
Knowledge of hEDS/HSD prevalence rates 59 4%
Confidence in caring for women and babies with hEDS/HSD 173 13%
Clinical decision making in relation to childbearing with hEDS/HSD 180 14%
How to improve maternity staffs’ knowledge of hEDS/HSD 160 12%
How to identify hEDS/HSD symptoms and what to do about them 159 12%
Other: 7 1%
Other Answer Votes
Everyone is different! Listen to the patient! We have had to learn to deal 1
cross over symptoms. Impact on common pregnancy conditions eg PGP, preeclampsia 1
Adult learning principles. What would be useful to the staff 1
validation of the individual different symptoms 1
All of the above, trying to educate colleagues about EDS/Chiari is hard work 1
Incentive to learn – perhaps a way to earn more if they complete a course? 1
Positioning 1

person standing near tableSo how will we use this information? We will use your votes to ensure that the things that matter most to you are included within two international surveys. Once these surveys have been designed, we will be submitting our research plan to the ethics committee at Coventry University for approval. Once ethical approval has been granted, these surveys will be opening very soon to both maternity staff and those childbearing with hEDS/HSD. We hope that the results of these surveys will give us an overall picture in relation to how both maternity staff and childbearing women with hEDS/HSD may be better supported, so please do look out for them and share them where you can.

Many thanks again for all of your responses and suggestions!

🎓😁🙌❤

If you would like to follow the progress of work going forward..

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

1

Have your say in designing future research on childbearing with hypermobile Ehlers-Danlos syndrome: VOTE NOW!

THESE POLLS ARE NOW CLOSED

YOU CAN SEE THE RESULTS OF THEM HERE..

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  & childbearing.

This will allow us to:

  1. 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)
  2. Spend some time with relevant people/organisations to develop ideas and co-produce great things together
  3. 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?

Thank You on wooden blocks

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..

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤