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10 Top tips for caring for women with Hypermobile Ehlers-Danlos Syndrome in pregnancy for International Day of the Midwife #IDM2018 & #EDS awareness month

 or ‘International Day of the Midwife’ falls on May the 5th of every year. The theme for 2018 in three languages is…

  • Midwives leading the way with quality care
  • Sages-femmes, ouvrons la voie avec la qualité des soins
  • Matronas liderando el camino con un cuidado de calidad 

Also… Every May is Ehlers-Danlos Syndrome (EDS) awareness month around the world.

As such….for , and EDS awareness month… I shared 10 top tips for caring for women with hypermobile Ehlers Danlos Syndrome (hEDS) during pregnancy birth and beyond. These tips come from my latest paper, authored in partnership with Dr. Gemma Pearce (@GemmaSPearce) and Dr. Emma Reinhold (@DrEReinhold ), entitled …

Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond

Here, we present care considerations for midwives and the multidisciplinary team caring for this unique subgroup of childbearing women. However, we hope that women with hEDS will also benefit from this paper, as they make decisions in partnership with their professional health care teams. You can read the press release from this paper here.

I would personally like to thank the board members of the British Journal of Midwifery for making this article FREE for all to read. I would also like to thank the Royal college of Midwives for sharing news of the article here…and the Nursing Times for sharing further news here.

So what can midwives do to maximize the quality of care given to women with hEDS throughout pregnancy birth and beyond?…First of all….Know the facts…

  • There have been no prevalence studies since EDS received a major reclassification in 2017
  • Earlier estimates from 2006 suggest a prevalence rate of 0.75-2% for hyper mobile EDS
  • hEDS is the most common form of EDS
  • Up to 78% of women with hEDS could also have a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS)
  • POTS predominantly occurs in women of childbearing age
  • EDS is considered to remain largely under diagnosed.

Tips for midwives

  1. Discuss individual needs with women, as no two cases will be the same. Do this early, and always in partnership with the woman and the wider multidisciplinary healthcare team.
  2. Consider early referral to obstetric, physiotherapy and anaesthetic teams in partnership with the woman.
  3. Consider the need for alternate maternal positioning during pregnancy, birth and beyond. To minimise the risk of injury, positioning should be led by the mother.
  4. As wound healing can be problematic, the use of non-tension, non-dissolvable, deep double sutures, left in for at least 14 days is advisable.
  5. Wait longer for local anaesthetics to take effect and consider giving maximum dosage. Always be led by the mother on whether pain relief is sufficient
  6. Always consider the significance of a routine observation in light of existing POTS and/or EDS symptoms
  7. Promote spontaneous pushing rather than directed pushing during birth
  8. Promote effective pain management and the use of therapeutic birthing environments to promote reductions in stress
  9. Consider additional joint support for newborns suspected of having hEDS
  10. Document all joint dislocations and bruising marks on the newborn from birth to avoid misdiagnosis and/or wrongful accusations of mistreatment.

Research into EDS and childbearing is in it’s very early stages. We hope to build on this work to make a difference for all women with hEDS during pregnancy, birth and beyond.

pregnant belly

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

Follow me via @SallyPezaroThe Academic MidwifeThis blog

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

 

 

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Debunking Midwifery Myths

New article published here: Oh baby: seven things you probably didn’t know about midwives

…please share it widely!

dad with baby

As I am now coming to the end of my PhD (With lot’s of new and exciting things on the horizon I hope), I have been delving into the depths of the largest global online survey of midwives to date – the voices of over 2470 midwives in 93 countries!

Not only is this really an awesome and very important piece of work… it also holds some quite harrowing findings for our beloved midwifery profession. Yet this report also indicates that – if the voices of midwives are listened to, and if midwives are enabled to overcome gender inequalities and assume positions of leadership – quality of care can be improved for women and newborns globally. Wow….OK…we had better get to work then!

ALSO…

“Professionally, 89% of respondents reported that a clear understanding of what midwifery involves is critical for change to take place. Concerns were also expressed over the perceived devaluing of midwifery combined with the increasing medicalisation of birth.”

 

baby on blue

Professionally, the participants expressed concern about a lack of understanding of what “midwifery” is, the devaluing of the midwifery profession combined with the increasing medicalisation of birth, and the underlying weakness in midwifery education and regulation.

Now, I don’t claim to be able to fix the world in a day..but there was one thing that I thought I may be able to do from behind my PC. I could get an article published in @ConversationUK about the midwifery profession…perhaps I could even debunk some myths and set the record straight!…

I had my article published…please share it widely via the link below:

Oh baby: seven things you probably didn’t know about midwives

Now I was limited in this article. Limited in words and in how many points I was able to make in one article…editors need to keep their publications engaging!..and so yes…I did not manage to publish everything in this article as I would have liked to…and yes there are many many more myths about midwives that need to be debunked. But I am hoping that this will the a start of a new conversation.

Midwifery is defined as “skilled, knowledgeable and compassionate care for childbearing women, newborn infants and families across the continuum from pre-pregnancy, pregnancy, birth, postpartum and the early weeks of life” and it should be celebrated at every opportunity.

Let’s keep the conversation going around the importance of the midwifery profession. Midwives are crucial to the delivery of high quality maternal and newborn care and subsequent reductions in maternal and newborn mortality around the world. Yet they must be celebrated, respected and supported.

The core characteristics of midwifery include “optimising normal biological, psychological, social and cultural processes of reproduction and early life, timely prevention and management of complications, consultation with and referral to other services, respecting women’s individual circumstances and views, and working in partnership with women to strengthen women’s own capabilities to care for themselves and their families” – Can we start to spread the word on this now please?

baby on back

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

Follow me via @SallyPezaro; The Academic Midwife; This blog

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

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#NewResearch published on route to supporting #NHS staff in distress

This month I have had 2 pieces of  published with 2 of my favorite co-authors…@WendyClyne1 (Senior Research Fellow; Research Development Lead; Coventry University, Coventry · Centre for Technology Enabled Health Research) &  (Medical Doctor; King’s College London, London · Department of Primary Care and Public Health Sciences).

New Research word cloud

Wendy and I asked an expert panel what should be prioritised in the development of an online intervention designed to support midwives in work-related psychological distress. We did this via the Delphi methodology, and you can see the published protocol for this research here. Overall, participants agreed that in order to effectively support midwives in work-related psychological distress, online interventions should make confidentiality and anonymity a high priority, along with 24-hour mobile access, effective moderation, an online discussion forum, and additional legal, educational, and therapeutic components. It was also agreed that midwives should be offered a simple user assessment to identify those people deemed to be at risk of either causing harm to others or experiencing harm themselves, and direct them to appropriate support. You can read this full results paper here.

As this group of experts agreed that midwives would need both confidentiality and anonymity online in order to seek and engage with effective support, Wendy, Clare and I decided to explore the ethical issues associated with these provisions. We did this by conducting a Realist Synthesis Review. You can read our full review here.

We largely argue that..

In supporting midwives online, the principles of anonymity, confidentiality and amnesty may evoke some resistance on ethical grounds. However, without offering identity protection, it may not be possible to create effective online support services for midwives. The authors of this article argue that the principles of confidentiality, anonymity and amnesty should be upheld in the pursuit of the greatest benefit for the greatest number of people.

We now call upon the wider health and social care communities to join us in a further dialogue in relation to this in pursuit of robust ethical stability…Care to join us in this?

– Comment below or make contact via this contact form:

The findings of this research will inform the development of an online intervention designed to support midwives in work-related psychological distress, and we sincerely wish to express our gratitude to all of the participants who have contributed to this project so far.

Ongoing plans include the scaling up of this project to support other health care populations to enhance the well being of staff, patients and the NHS as a whole.

The best is yet to come. Until then, take care of yourselves and each other.

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Midwives in distress: Working towards a consensus in the solution

Firstly, the reason that it has taken me a while to write here is that I have been buried in the most fascinating data from round one of my Delphi study to achieve consensus in the development of an online intervention designed to support midwives in work-related psychological distress. I won’t spoil the results for you, as I hope to be publishing the results in the new year, but suffice to say, there were many conflicted opinions, new ideas and strong voices within this expert panel.

I am very excited to move forward with this project in light of these responses!

This project now feels as if it is starting to belong to the people who have been a part of this so far. They are shaping the vision for this, and growing it with their support…. Its awesome!

Last month I was also finalising the revisions for my latest paper , ‘Midwives Overboard!’ Inside their hearts are breaking, their makeup may be flaking but their smile still stays on. This latest output was kindly co-authored by Wendy ClyneAndrew TurnerEmily A. Fulton, and Clare Gerada. I for one am very proud of this piece of work, as it shines a light upon the current situation, in which midwives all around the world are indeed suffering in psychological distress. Writing this piece not only became cathartic in resolving my own professional experiences, but it has also reinforced to me that there is a real need and desire to design an intervention to support midwives….and now I am a little closer to turning this vision into practice.

You can reach the 2nd round of the Delphi study here (This study is now invite only, but watch out for new opportunities to become involved in more research soon)!

I have been submitting papers to conference so that I may begin to share these results in person…but I will not have this opportunity until the ‘Great Minds Don’t Think Alike’ – Nursing and Midwifery Conference, in January 2016.

I hope to meet some of you there!