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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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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!

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What is the Future of Psychological Support for #NHS Midwives? My interview with @MidwifeDiaries

This blog was originally posted by Ellie from www.midwifediaries.com on June 2, 2015. We spoke in May 2015 about my research project and the issues surrounding midwives (and student midwives) in psychological distress.

What’s The Future Of Psychological Support For Midwives? Interview w/ Sally Pezaro
She wrote :”Who is this researcher?”

This was me, a few weeks ago stumbling across a blog. This woman was sharp, driven, and had all her energy focussed on supporting the mental health of midwives.

She really got how unchallenged the assumption is that midwives are ok to keep going 24/7/365.

Sally Pezaro is doing her PhD on supporting midwives in psychological distress. Her project is exciting, and if it gets launched, will be something we can all use to keep healthy.

In this interview, we talk about why it’s so important to look after midwives, bullying in midwifery, and some strategies for mental wellbeing.

Most awesome quote from this interview: ‘Don’t give everything you have until your batteries run out. Yep – must put that on twitter.

Here are the links we discussed, ’cause I bet you’ll ask!

What’s Sally’s doing is so brilliant because she’s noticed something that is wrong in midwifery – and is doing something about it. Her project reminds me of that quote:

“Be The Change You Want To See In The World”

It’s so good to know that we do have researchers on our side, trying to make things better.

Now, Sally and I would love to hear from you. What’s your answer to the question I posed at the end of the interview?

“What do you find most challenging in looking after your mental health as a midwife, and what do you think could be changed to help with this, both on an organisational trust level, and on a personal level?”

Thanks so much in advance for all the kind, insightful and inspiring comments that are left. I’m excited to hear what you find hardest, and what could help you look after your mental health better.

As always, thank you for your time and attention, sharing and being so brilliant. MidwifeDiaries is turning into an incredible, supportive place for midwives, and I’m so grateful.

Ellie xxx

-> I would also like to add a link to the newest NMC Code (2015) as midwives can now use the power of the code to challenge psychologically unsafe professional behaviour in the workplace. The code now states that midwives must be supportive of colleagues who are encountering health or performance problems. Midwives also have a duty to care for themselves under this new code, so please do not feel guilty for giving self care. We must all work to create therapeutic working environments….

Five experiences are judged necessary for health. Primary emotional development, attachment, containment, communication, inclusion and agency. These can be deliberately recreated in therapeutic environments to form a structure for ‘secondary emotional development’. Failure to recognise the importance of these qualities of an environment can cause unhealthy, or frankly toxic, psychosocial environments in various settings (Haigh, 2013).

Haigh, R. (2013) ‘The quintessence of a therapeutic environment’, Therapeutic Communities: The International Journal of Therapeutic Communities, 34 (1): 6 – 15.

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Partnering with the Colombo Institute of Research and Psychology – Sri Lanka…

colombo institute of research and psychology

colombo institute of research and psychology

I apologize for the lack of posts over the last 2 weeks. I have been to visit the wonderful people in the Colombo Institute of Research and Psychology and the National Institute of Mental Health, Angoda.Then of course I had to deal with copious amounts of work/emails upon my return, which I am sure will fill exciting posts to come.

When I embarked upon this research journey, I also signed up for the Global Leaders Programme at Coventry University. I did this to become a part of the global healthcare community and reach key opinion leaders with the same directive goals as myself…Starting the conversation has always been the most productive way to make change happen. Indeed, it has already put me in touch with some inspiring people, and this trip proved to be no different.

I have always had a keen interest in getting to know how the various healthcare systems across our globe work. We are all human… so what works best? I have already visited the Royal Victoria Teaching Hospital in Banjul, The Gambia and the Gimbie Adventist Hospital, Ethiopia. With the help of Maternity Worldwide and clinical work placements, I was privileged to have the opportunity to see how our health care systems contrast and compare to other healthcare systems around the globe. I was excited to take part in this visit, which promised to enlighten us all to the mental healthcare provisions and psychology research in Sri Lanka.

National Institute of Mental Health, Angoda Colombo, Sri Lanka

National Institute of Mental Health, Angoda Colombo, Sri Lanka

Speaking with the researchers in the Colombo Institute of Research and Psychology, it was clear that their research shared the same concerns as western research. Healthy debates generated interesting insights into the work they were forming in breaking stigma and securing new funding for the people of Sri Lanka. However, their population base faces some new and very real challenges:

-Less than 1% of Sri Lankas healthcare budget is spent on the mental health care of the nation.

-Sri Lankan communities often use astrology and homeopathic remedies to treat mental ill health rather than access medical facilities.

– There are only 2 psychiatric consultants for the whole of Colombo and surrounding areas.

-Limited facilities for mother and baby units, which need more space for mentally unwell mothers and their families. (In Sri Lanka, reported maternal death due to suicide is notably high) – See Puerperal Psychosis.

– The stigma around mental health issues remains great in Sri Lanka, therefore many of those who may be ready to re-enter their communities following treatment have no where to return to. They become rejected by their families.

– This stigma creates a culture where those in need are reluctant to seek help.

– Families are keen not to disclose the mental ill health of loved ones and may isolate problems.

-Mental health facilities are used as holding places for those on remand following the identification of the antisocial behavioral symptoms of ill mental health.

Speaking to one of the consultant psychiatrists about these issues was so valuable to my research. Comparing the etiologies of psychological distress with the cultures and social norms of both populations highlighted how our UK populations may face triggers for distress which are entirely unique to the UK. Although some of these factors will also translate to other populations, it may be that specific factors correlate only with our own health care professionals, within western society.

From the point of view of research, this leaves much to be explored. How do we breakdown the populations into completely homogeneous samples? Is it ever possible to?

After speaking with Dr Shavindra Dias from the University of Peradeniya, (which by the way is the most beautiful university campus I have ever seen!) it is clear that the connections I have made throughout this research trip will last throughout my career as I continue to network with and learn from some of the most outstanding and inspirational leaders who take pride in making changes to ensure a brighter future for all. The struggle to improve the overall well being of society by authenticating and placing value upon the needs of those in psychological distress is hard. Yet I still believe that is the most noble and kind thing we can do for humanity. The connections I have made throughout this trip will forever remain a part of my professional journey going forward, and I would like to thank @PsychColombo again for hosting such an amazing trip of discovery in partnership with @covcampus.

In addition to this wonderful experience we also visited:

-Galle Face Green

-Galle Fort

-The National Museum of Colombo

-International Maritime Museum in Colombo

– The National Elephant Orphanage

-The Temple of the Tooth

-Anuradhapura

-Botanical Gardens

-Tea Factories

View from the World Trade Centre in Colombo

View from the World Trade Centre in Colombo

Sri Lankan Elephant Orphanage

Sri Lankan Elephant Orphanage

I hope to reunite with the amazing people I met here soon…. Perhaps for my up and coming Delphi Study?