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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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Highlights from the 31st ICM Triennial Congress in Toronto, Canada #ICM2017 #ICMLive

toronto

My vacation is now over following a visit to the 31st International Confederation of Midwives Triennial Congress in Toronto, Canada (ICM). I think we would all agree that this was an emotional occasion, as thousands of midwives came together from all over the world to both celebrate our wonderful profession and share new research, knowledge and ideas about our exciting future.

I was personally in awe of our midwifery leaders, who certainly inspired a passion for change, strength and future thinking in midwifery practice. I would like to think that my work will go some way towards building a bright future for the profession, and one day I hope to stand beside those on the main stage of midwifery who are ultimately steering the ship. Yet for now, I am learning from a plethora of inspirational midwives about how to thrive and implement change. As I come to the end of my PhD, I reflect on how I might move forward in partnership with the most inspiring midwives I know. It was an honor to spend time with them in Canada….see all of those flags?…What a wealth of knowledge!

Naturally, we were flying the flag for the Brits…

Throughout the conference I naturally gravitated towards all of the midwifery workforce presentations, my favorite and most passionate area of workforce research…Here are some highlights from these sessions below:

I would like to thank all of these wonderful research groups for sharing their insights with me, and for helping my understanding of midwifery workplace wellbeing to grow. I would also like to thank those at Nottingham University and Elsevier for inviting me to their exclusive evening receptions. I felt very honored to be among the best academic midwives in the world!

Thank you also to those of you who came to see me present some of my own research (done in partnership with my wonderful colleagues at Coventry University and NHS England of course). It was really enlightening to hear your thoughts on the staff experience!…The best is yet to come!

Equally, I would like to thank the audience who came to discuss my PhD work following my presentation at this wonderful conference. Indeed, there was much interest in this work going forward, and whilst other interventions were presented for mothers and babies, it was clear that by following the MRC framework for developing complex interventions and by incorporating the Revised Transactional Model (RTM) of Occupational Stress and Coping, this intervention, being deeply rooted within an evidence base, is now ready for co-creation.

It was particularly interesting to hear the audience keen to invest in this project and disseminate it widely across the profession. As an online intervention designed to support midwives in work-related psychological distress, this intervention certainly has the potential to be widely adopted. This was music to the ears of a global midwifery audience, who may often see things developed in other countries, and yet be unavailable in their own area of practice.

Again, the theme arose here that midwives wanted a place to talk and seek help confidentially, away from traditional channels. I see such places growing organically in the online arena, yet none seem to be fit for purpose, evidence based or co-created on a large scale. To me this suggests that the next phase of my research (to build and test an evidence and theory based online intervention designed to support midwives in work-related psychological distress) will be well received by the midwifery community, especially if it has the support of larger healthcare organisations who can champion its implementation, dissemination and testing.

To spread and embed a large and complex intervention such as this across the midwifery profession would indeed be a legacy. Yet this work may also support excellence in maternity care, increase safety and support effective retention and recruitment strategies for maternity services around the world. As such, taking this work forward will indeed be crucial since it has been reported that reducing stress and fatigue among maternity staff is key to reducing baby deaths and brain injuries during childbirth, according to a detailed new analysis published by the Royal College of Obstetricians and Gynecologists. The challenge is to turn the vision for online support into practice.

icm

This was a wonderful, inspiring and thought provoking conference. To see a more detailed day by day summary, please see the wonderful blog by my dear friend @Dianethemidwife ….

Day One

Day two

Day three

Day four

Day five

Last day

It is sad that my time in Toronto is now over, but I have returned home with a new found sense of hope and enthusiasm for doing great things in the midwifery profession….

Until next time..🤚🇨🇦🇬🇧

 

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

Follow me via @SallyPezaroThe Academic MidwifeThis 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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Midwife Burnout: A Brief Summary

This week I have seen midwife burnout rear its head more than a few times. This is an issue close to my heart and one I dedicate my research to on a daily basis. Being a registered midwife and having practised through turbulent times myself, I know how it feels to give all that you have and yet forget to put yourself first at any time. You become a burnt out midwife, unable to give the highest quality or safest maternity care.

Here’s how it may happen…

 

The recent National  Maternity Review highlighted that midwives were more likely than any other professional group to report feeling pressured at work. Also, levels of staff stress in the NHS are the highest of any sector and staff consistently report a lack of compassion shown to them from leaders and managers within their organisations.

I find this incredibly sad…. We want to care so much for women and their babies…yet we fail to care for ourselves and each other.

The latest  work-related stress guidance cites one of my paper’s, which claims that “Midwives are entitled to a psychologically safe professional journey”… This is wonderful to see…but will we ever see midwives being cared for in equal partnership with the women and families they care for?

A colleague of mine recently noted that ‘as soon as we say that patients come first…we immediately devalue the staff’….

This got me thinking….and writing this blog post.

In the midwifery news this week:

I have come across the following articles in one way or another…

The experience of professional burnout can be one of extreme personal pain which some midwives feel they may never recover from. Despite global recognition of the destructive phenomenon of burnout, midwives may not understand what was happening to them. They can feel judged as managing their practices poorly, experience isolated feelings of shame, and feel unable to disclose their escalating need for help.

Young, C. M., Smythe, L., & Couper, J. M. (2015). Burnout: Lessons from the lived experience of case loading midwives. International Journal of Childbirth, 5(3), 154-165.

My 3 latest papers have addressed the issue of midwife burnout and psychological distress in great detail…I shall be publishing more shortly… for further reading see:

Pezaro, S. The midwifery workforce:  A global picture of psychological distress – ARTICLEinMIDWIVES: OFFICIAL JOURNAL OF THE ROYAL COLLEGE OF MIDWIVES 19:33 · MARCH 2016

Pezaro S (2016) Addressing psychological distress in midwives. Nursing Times; 112: 8, 22-23.

Pezaro, S., Clyne, W., Turner, A., Fulton, E. A., & Gerada, C. (2015). ‘Midwives overboard! ‘Inside their hearts are breaking, their makeup may be flaking but their smile still stays on. Women and Birth. In press.

Midwife burnout is rarely understood…Yet one thing is clear, we really do need to find new ways to support each other and look after ourselves for the benefit of all midwives working within midwifery profession, and the families we care for.

This week I will continue to write my systematic literature review which aims to identify the nature and existence of interventions designed to support midwives in work-related psychological distress, and their effectiveness at improving the psychological well-being of midwives.

Once this is complete, we will be one step closer towards effectively supporting midwives in work-related psychological distress.

Until then, look after yourselves…and each other.

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Our new research needs to know what #ShowsWorkplaceCompassion – Use the hashtag to let us know

In addition to my PhD work, I am currently working with NHS England and Coventry University on a new work programme which looks at how we might improve the staff experience in healthcare work. This new research needs to know what #ShowsWorkplaceCompassion, so that we can inform new initiatives and define what it is that we need to do in order to improve the workplace experience for healthcare staff. To do this, we need those who work in healthcare to use the hashtag (ShowsWorkplaceCompassion) on twitter to share their thoughts.

Examples might be:

‘Letting me take my lunch break #ShowsWorkplaceCompassion’

‘Finishing the meeting on time #ShowsWorkplaceCompassion’

‘Respecting my work/life balance #ShowsWorkplaceCompassion’

You can follow the research account on Twitter: @NHSStaffExp and me on Twitter @SallyPezaro. I also wanted to thank @FabNHSStuff for sharing the information on this project here

We plan to analyse all of the tweets that contain the hashtag #ShowsWorkplaceCompassion and produce a research report that consolidates all of our findings in order to share them with the wider healthcare community, policy makers and whose who are looking to implement change.

Please read and share the full details of this project here -> http://bit.ly/22HurbF

You can tweet as many or as few times as you like about any aspect of healthcare….Just make sure that you include #ShowsWorkplaceCompassion in your tweet in order to take part.

If you choose to take part in the #ShowsWorkplaceCompassion research campaign, please read the information which tells you all you need to know about being a participant.

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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!