0

#EDSMaternity #hEDS to #pint19

 is a worldwide science festival that takes place 20-22 May and brings researchers to your local pub to present their scientific discoveries.

Over 500 events in >30 cities

This year I have been invited to present our scientific discoveries in relation to hypermobile Ehlers-Danlos syndrome (hEDS) in the context of childbearing to a Pint of Science audience in …Coventry!

#EDSMaternity #hEDS to #pint19

Date Wednesday 22 May 2019
Venue Backhaus & Co. Unit 7 Fargo Village, Coventry, CV1 5ED
Theme Our Body
Talk Title Hypermobile Ehlers-Danlos Syndrome in Childbearing
Who is invited? Everyone… please spread the word!
Talk time 8:15pm

 

 to ! under the theme: Our Body – medicine, human biology, health

Pint of Science 2019

The overall theme for : “What Next?”

  • What Next for science?
  • What Next for Pint of Science?

Find out 20-22 May.

😍

We can’t wait to see you all there @pintofscience 

Tickets for #pint19 are on sale from today (8th April 2019)… All tickets will be £4. Click here to learn more.

🎓😁🙌❤

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 💚💙💜❤

Advertisements
0

How to test someone for hypermobility using the Beighton score and more from the GOLD Online midwifery conference

I was honored to be an invited speaker to the GOLD online Midwifery conference this February (2019). It was wonderful to present our latest findings to an international audience, and I always prefer to do things online, from the comfort of my own office.

The team at GOLD midwifery were very supportive throughout my experience with them, and invited me to join in a podcast interview on my chosen topic..

‘Exploring the needs of childbearing women with Hypermobile Ehlers-Danlos Syndrome (hEDS)’ – You can access this via the video below.

The audience were very active in participation, and it was interesting to see how the live polls throughout my live presentation were completed. We had midwives join from all over the world! Some had heard of hEDS, and some had not. Yet everyone was keen to learn more.

This conference also enabled me to introduce my colleagues via video. I will introduce you to them here again now via the two following videos.

Dr Gemma Pearce

Dr Emma Reinhold

By far the most engaging part of my presentation (as told to me by delegate feedback) were the videos which demonstrated what hyperextensible skin looks like, and how to use the Beighton score to test someone for hypermobility. As such, I will share these videos here too. I would love to know what you think of them.

Looking for a video on how to test someone for hypermobility using the Beighton score? See below

Looking for a video about hyper extensible skin? See these two below:

Whilst these explanatory videos were indeed fab, I was also able to share some of our new findings in relation to women’s childbearing experiences with hEDS. The 40 interviews we carried out during this project gave us a much deeper understanding of the issues these childbearing women face. At times they are not believed, belittled and/or accused. Other times, their experience of trauma means that they are not willing to bare any further children. Our findings as a whole are concerning, and we hope to publish and share them soon, so that we can start making quality and safety improvement plans in partnership with key stakeholders.

It is wonderful to know that delegates at this conference were enthusiastic about following our research going forward. This experience has definitely affirmed to me that midwives around the world are thirsty for new knowledge and ways to improve their practice.

Thank you to the delegates and organizers of the GOLD Online Midwifery Conference logging in from over 50 countries!!! 

Delegate locations at the GOLD Midwifery conference

It was wonderful to say goodbye at the closing ceremony too. Thank you for inviting me!

I think this is the beginning of a really special journey.

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

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 💚💙💜❤

 

0

Midwives experience domestic abuse too…so how can they be supported in the workplace?

On Thursday October 4th 2018, The Royal College of Midwives (RCM) launched a report entitled ‘Safe Places? Workplace Support for those Experiencing Domestic Abuse’ at its Annual Conference in Manchester Central.

love shouldn't hurt-printed on back of woman

I was privileged to be asked to perform and write up the analysis for this report. The findings truly moved me. If you know my work at all, you will know that it is heavily focused upon securing the psychological wellbeing of midwives. This is because I do not believe that excellence in maternity care can be delivered to mothers and babies without the provision of effective support for midwives.

Findings here revealed that some midwives trained to recognise domestic abuse and support women, were sometimes not recognising that they themselves are victims of domestic abuse.

“I was allowed to stay overnight on my delivery suite to avoid going home to my abusive partner”

“I was made to feel I was a nuisance, constantly asking me and contacting me, pressurizing me in to coming back to work. I gave in and did but I was soon off again as I still wasn’t well, and I then left midwifery because I didn’t want to be dismissed. I didn’t receive any support that was effective for me”

“I have and was been treated very badly by my place of work, absolutely no support or care and compassion”

“I was given a specific senior midwife who I could go to for support, to discuss things at times when home was particularly bad and to deal with any sickness absence – helpful as one person knew what was going on and I could be truthful, especially about the reasons for sickness absence sometimes”

“All staff should be asked about domestic abuse or violence on a regular basis”

“Police and social services were unhelpful, and no support provided. Neither I nor my children were offered counselling or directed to appropriate services despite asking several times for help. One police officer even commented that due to my ethnicity I could handle the situation myself.”

person holding white printer paper

Based on the findings the RCM has put forward the following evidence-based recommendations. These will enable maternity service managers and NHS Trusts/Boards to support staff experiencing domestic abuse more effectively.

  • All NHS Trusts/Health Boards should develop specific policies to support who are victims of domestic abuse, aligned to existing guidance from the NHS Staff Council developed in 2017.
  • NHS Trusts/Health Boards should provide and publicise confidential domestic abuse support services for affected staff, including access to IDVAs, external counselling and legal services as appropriate.
  • NHS Trusts/Health Boards should ensure that all managers and supervisors are trained on domestic abuse issues, so that they can recognise signs of domestic abuse in their staff and confidently undertake their safeguarding obligations.
  •  NHS Trusts/Health Boards should ensure that staff at all levels are trained on domestic abuse issues and made aware of relevant workplace policies as part of their induction programme and continuous updating and are made aware of support services.

It was a pleasure to work with esteemed colleagues at the RCM to put this report together. Midwives and maternity support workers are a highly valued workforce whom we rely on to provide optimal care for mothers and babies. It is our sincere hope that this report will enable maternity service managers and NHS Trusts/Boards to support staff experiencing domestic abuse more effectively.

“Thank you to all of the midwives and maternity support workers who took part in this survey. The wellbeing of maternity staff is intrinsically linked with the safety and quality of maternity services. Your thoughts, feelings and experiences have helped us to arrive at a deeper understanding of the resources required to support those experiencing domestic abuse.”

woman carrying newborn baby

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 💚💙💜❤

0

How does patient and public involvement work in research? An example exploring midwives’ workplace wellbeing.

Patient and public involvement or #PPI is defined by INVOLVE (part of, and funded by, the National Institute for Health Research) as: 

“Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.”

three person pointing the silver laptop computer

In our latest publication, we explain how patient and public involvement works in maternity service research. Here, we asked childbearing women about their experiences in relation to the workplace wellbeing of midwives. We also asked them how they felt about new research looking to create and test an online intervention designed to support midwives. We did this via a discussion group, where participants were offered refreshments and remuneration for their time. Our aim was to answer the following questions:

  1. What are the perceptions of new mothers in relation to the barriers to receiving high quality maternity care?
  2. What are the perceptions of new mothers in relation to the psychological wellbeing of midwives working in maternity services?
  3. What are the perceptions of new mothers in relation to a research proposal outlining the development and evaluation of an online intervention designed to support midwives in work-related psychological distress?

These PPI activities helped us as researchers to do the following:

  • Better understand this research problem from the perspectives of new mothers
  • Validate the direction of future research plans
  • Explore new areas for data collection based on what really mattered to mothers and their babies
  • Improve upon the design of the proposed online intervention based on what really mattered to mothers and babies.

You can read our full methodology via the linked citation below:

Pezaro, Sally, Gemma Pearce, and Elizabeth Bailey. “Childbearing women’s experiences of midwives’ workplace distress: Patient and public involvement.” British Journal of Midwifery 26.10 (2018): 659-669.

This article was launched in the October edition of the British Journal of Midwifery at the Royal College of Midwives annual conference in 2018 .

white and black Together We Create graffiti wall decor

Put simply, the findings in relation to what participants said were analysed thematically and turned into meaningful insights or ‘PPI coutcomes’. In this sense, we used a co-design approach to inform the direction of new research. How did this work exactly? See figure below.

Figure 1. Overall findings

Initially, we considered that it may have been useful to include midwives in PPI activities, as they were to be the intended recipients of the intervention proposed. However, INVOLVE briefing notes state that:

“When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services. Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services.”

A such, we could not include midwives in these PPI activities due to them have a ‘professional role in health and social care services’. Nevertheless, as midwives were the intended end users and direct beneficiary of the intervention proposed, we argued that they should “not necessarily be excluded from PPI activities simply because they treat patients”. This debate lends itself to further academic discussion and we welcome ideas on this going forward.

two person standing on gray tile paving

Both national and international strategies and frameworks relating to healthcare services tend to focus on putting the care and safety of patients first , yet these findings suggest that to deliver the best care to new mothers effectively, the care of the midwife must equally be prioritised. As such, we now intend to seek further funding to continue this work and secure excellence in maternity care.

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 💚💙💜❤