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 💚💙💜❤

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 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 💚💙💜❤