0

A Call for Research Participants: Maternity Staff & Service Users Required

recruitment poster hEDS womens survey

We are currently looking for people who meet the following criteria to complete an online survey in relation to their childbearing experiences:

  • Women who have been diagnosed with either hypermobile Ehlers-Danlos Syndrome and (hEDS), Hypermobility Spectrum Disorders (HSD), EDS type III, EDS hypermobility type, or Joint Hypermobility Syndrome
  • Those who are over the age of 18 years
  • Those who have given birth in either the UK, Ireland, USA, Canada New Zealand, or Australia since 2007

If you meet the above criteria and would like to complete this survey then

please click HERE

What is the purpose of this survey?

  •          To identify the childbearing outcomes associated with hypermobile Ehlers Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorders (HSD)
  •          To explore experiences of maternity care among women with hEDS/HSD
  •          To evaluate the impact of recently published maternity care considerations for that childbearing the context of a hEDS/EDS diagnosis
  •          To identify ways in which maternity care could be improved for women with hEDS/ HSD.

——————————————————————————————————————————

recruitment poster hEDS maternity staff survey

We are also looking for maternity staff  (anyone who provides clinical care to childbearing women) in the UK, Ireland, USA, Canada, New Zealand, or Australia to complete a 20 minute questionnaire about providing maternity care to women with hypermobile Ehlers-Danlos syndrome (hEDS) and/or Hypermobility Spectrum Disorders (HSD)

If you are a maternity staff member and would like to complete this survey,

please click HERE 

Please note: To participate, you DO NOT need to have knowledge or experience of caring for women with hEDS/HSD.

If you are a maternity staff member and would like to complete this survey,

please click HERE 

ED Society site

What is the purpose of this survey?

To explore awareness and knowledge of hypermobile Ehlers-Danlos Syndrome and (hEDS) and Hypermobility Spectrum Disorders (HSD) among maternity staff To explore what decisions maternity staff may make when caring for a women with hEDS/HSD To indicate how maternity staff could be supported to care for women with hEDS/HSD. A 2018 review was published which detailed maternity care considerations for women with hEDS/HSD. For participants who have read this review, this survey will also explore whether and how understanding and practice related to hEDS/HSD may have been impacted. Please note that if you have not read this review, you can still complete this survey.

Image result for online survey

Types of staff we want to hear from:

  • Consultant midwife
  • Senior midwife
  • Midwife
  • Student midwife
  • Nurse midwife
  • Maternity support worker
  • Junior obstetrician
  • Obstetric registrar
  • Consultant obstetrician
  • Junior anaesthetist
  • Consultant anaesthetist
  • Obstetric nurse
  • Physiotherapist
  • General Practitioner (GP)…etc.

If you are a maternity staff member and would like to complete this survey,

please click HERE 

@JennytheM poem

——————————————————————————————————————————

Follow this entire project online with #EDSMaternity

@GemmaSPearce @SallyPezaro@DrEReinhold@LaurenMPurdy

We will share the results when they become available!

Thanks to everyone who has completed & shared this survey so far!

Thanks

Follow me via @SallyPezaroThe Academic MidwifeThis blog

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

Advertisements
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

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 having 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 💚💙💜❤

3

19 Things That Show Workplace Compassion for Healthcare Staff

We are all well aware of how the wellbeing of healthcare staff can affect the quality and safety of care. I have also talked at length about the wellbeing of health care staff and the theories surrounding work-related psychological distress. But do we really have any concrete idea of what shows workplace compassion for healthcare staff?

My research published in collaboration with Dr. Wendy Clyne, Dr. Karen Deeny and Dr. Rosie Kneafsey asked Twitter users to contribute their views about what activities, actions, policies, philosophies or approaches demonstrate workplace compassion in healthcare using the hashtag #ShowsWorkplaceCompassion. It can be cited as follows:

Clyne W, Pezaro S, Deeny K, Kneafsey R. Using Social Media to Generate and Collect Primary Data: The #ShowsWorkplaceCompassion Twitter Research Campaign. JMIR Public Health Surveill 2018;4(2):e41. DOI: 10.2196/publichealth.7686. PMID: 29685866

Image result for compassion

The results of this study outlined 19 things or ‘Themes’ in relation to what shows workplace compassion for healthcare staff as follows…

  Leadership and Management
1 Embedded organizational culture of caring for one another
2 Speaking openly to learn from mistakes
3 No blame/no bullying management
4 Inspiring leaders and collective leadership
5 Financial investment in staff
6 Recognize humanity and diversity
  Values and Culture
7 Common purpose in a team
8 Feeling valued
9 Being heard
10 Enjoying work
11 Being Engaged at work
12 Use of caring language
  Personalized Policies and Procedures
13 Recognition of the emotional and physical impact of healthcare work
14 Recognition of non-work personal context
15 Work/life balance is respected
16 Respecting the right to breaks
17 Being treated well when unwell
  Activities and Actions
18 Small gestures of kindness
19 Provision of emotional support

How will you implement these things within your healthcare workplace? I would love to hear your thoughts on this…

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 💚💙💜❤

0

How to publish your PhD thesis in 6 easy steps

Whilst I am sure that there are many reputable companies who will publish your thesis out there, I wanted to share with you all how I published mine.

Image result for publish

First of all, I believe that if you have a PhD then your work must be adding some original knowledge to the world. That means that your work is of value, and should therefore be published and disseminated widely. This is also true for students, whose work is of great value to the academic community.

See my post here about ‘Why Midwifery and Nursing Students Should Publish their Work and How’

But here, I wanted to map out one way to publish your thesis. It is the way I published mine.

Step one…

Publish background literature reviews to outline how you arrived at your research questions. Much of this work will summarize the first chapters of your thesis. It will also help you refine your ideas if you publish as you write.

My initial chapters were published as follows:

Pezaro, S The midwifery workforce:  A global picture of psychological distress – Article inMidwives: Official journal of the Royal College of Midwives (2016): 19:33

Pezaro S Addressing psychological distress in midwives. Nursing Times (2016): 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 29.3 (2016): e59-e66.

Step two…

Publish your ideas around the theories used in your work.

I did this by publishing a blog on theories of work-related stress. I also published a paper exploring the ethical considerations of what I was trying to do entitled ‘Confidentiality, anonymity and amnesty for midwives in distress seeking online support – Ethical?’. Opening this up for discussion meant that my thesis was much stronger overall.

Step three…

Publish your methods via research protocols.

Not only does this mean that you have claimed the idea for yourself in the academic world, but you also then get the benefit of a wider peer review of your work. I published the protocol of my Delphi study as follows:

Pezaro, S, Clyne, W (2015) Achieving Consensus in the Development of an Online Intervention Designed to Effectively Support Midwives in Work-Related Psychological Distress: Protocol for a Delphi Study. JMIR Res Protoc 2015 (Sep 04); 4(3):e107

Step four…

Publish each chapter of your work as you go.

Again, this gives your work added peer review in the process of developing your thesis. I published the two largest pieces of research in my thesis as follows:

Pezaro, S, Clyne, W and Fulton, E.A  “A systematic mixed-methods review of interventions, outcomes and experiences for midwives and student midwives in work-related psychological distress.” Midwifery (2017). DOI: http://dx.doi.org/10.1016/j.midw.2017.04.003

Pezaro, S and Clyne, W “Achieving Consensus for the Design and Delivery of an Online Intervention to Support Midwives in Work-Related Psychological Distress: Results From a Delphi Study.” JMIR Mental Health3.3 (2016).

Step five…

Publish summaries of your work for different audiences

Once you begin to pull together your entire thesis, you will begin to discuss the findings and arrive at certain conclusions. You can summarise these in a series of blogs and papers as you go. I published the following summary papers to reach both national and international audiences.

Pezaro, S (2018) Securing The Evidence And Theory-Based Design Of An Online Intervention Designed To Support Midwives In Work-Related Psychological Distress (Special Theme on Women in eHealth). Journal of the International Society for Telemedicine and eHealth. Vol 6, e8. 1-12.

Pezaro, S “The case for developing an online intervention to support midwives in work-related psychological distress.” British Journal of Midwifery 24.11 (2016): 799-805.

Step six…

Use info graphics to map out key points in your thesis

Once complete, your thesis will be published in full. Mine can be accessed here via the British Library and via Coventry University’s open collections. But it’s a mighty big document. Therefore, I produced the following infographic to map out my PhD journey for those looking for a shorter, yet engaging summary.

PhD infographic

…and there you have it. A fully published PhD thesis via a variety of avenues. I hope that you enjoy publishing your PhD thesis, and that publishing it helps you to defend it.

Also…If you need a co-author, let me know!🎓😉

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 💚💙💜❤

0

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 💚💙💜❤

 

 

1

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 💚💙💜❤