Hello! My name’s Jodie. I started my PhD in April 2022. I remember settling down on the very first day, and thinking ‘right, let’s get cracking!’ And then did precisely nothing for the rest of the day. Just had a look at some literature (I’m not sure I even read it). I remember thinking I should be doing so much, and be plugging 8 straight hours a day into my PhD, and feeling bad when I didn’t. I didn’t realise how different a PhD is. It really is self-directed, and that means you need to do and write in a way that works for you!
I’m a mental health nurse by background, with almost all of my practice being within Child and Adolescent Mental Health Services (CAMHS). I still do a bit of that, alongside writing my PhD, which is focused on the experiences of young people, family and professionals in their diagnostic journey within CAMHS. I chose this topic because I noticed that formal diagnosis within CAMHS is somewhat of a myth, and lots of young people and families would often ask me after 6 months of working with them, ‘what exactly is wrong?’ I knew the answer, but I couldn’t tell them, because that diagnosis has to be provided by a medical professional. And often, even if seen by a medical professional, a diagnosis isn’t given because it’s not deemed necessary, given that they can receive support without it, and sometimes, it can be perceived as harmful. But that didn’t seem to be the opinion of the young people and families …
So, I started a crusade. I started asking why so-and-so didn’t have a diagnosis, asking families and young people how they would feel if they did have one, and what they would prefer. The results were mixed, and when the opportunity for a PhD came up … I decided that this is something that we don’t talk enough about.
I completed my application to the RCBC, found out that I was eligible, and then had to interview for the PhD (*gulp*). I’m pretty certain I only got it through magic, but my supervisors (who I got through simply emailing everyone on the USW website who looked like they might help me) tell me that it’s because I had a really clear idea of what I wanted to do, and how I wanted to do it.
I planned a piece of research that aimed to look at how young people, their families and professionals considered and experienced the diagnostic process. I wanted to do this by speaking to them directly, and getting lots of juicy data which shed some light into their thoughts and feelings, and understand why they felt the way they did. Of course, to do this, I had to have an ethical nightmare given I was asking to interview a) young people and b) young people with mental health difficulties. You don’t get a much more vulnerable group. So I had to do the Health Care Research Wales (HCRW) ethics protocol, which took six months. Then cue another interview, where I basically had to argue against a bunch of really senior strangers that my study was valid, and necessary. I won.
Fast forward 18 months, and I’ve just finished my data collection. It took forever because low-and-behold, teenagers with mental health conditions are hard to pin down long enough to want to speak to a total stranger for free. They have enough going on, in fairness. But I finally have enough data to start my Interpretative Phenomenological Analysis (IPA), a method of analysis which considers people’s experiences in great depth, and also considers how my interpretations of this may impact the data. I obviously have a soft spot for it, so it is necessary to think about that and rein myself in.
I’m in a place now with the support of my lush supervisory team that I have submitted my systematic review for publishing, I’m presenting the findings at a conference in Barcelona in March 2024, and I hope to be on track to complete by July 2025. Afterwards, I want to shove my findings under as many noses as possible, because to me, the voice of the young people is not loud enough in their own mental health care, so I’m going to shout for them.
So many of us starting the research journey identify with
the above definition but it’s so
unnecessary. How is anyone ever meant to know how to research if they’ve never
done it before?
I started my research journey by supporting others with their studies largely on Thoracic prehab and blunt chest wall trauma but this is where that imposter syndrome starts, the frustration that the research I was working on was not mine from inception. How would I ever get from following in someone’s footsteps, doing exactly what they told me to do, to leading the way for others? It was my research mentor who pointed me in the direction of the RCBC first into research fellowship in 2021. I looked into the application process and started my application after attending the webinar, but my journey halted there, with the deterioration of my husband’s health. It was only when it came around again in 2023 that I sat and thought, if I don’t do it now, I never will. What I also wanted to do was set an example for my daughter. By this point we had lost my husband, her father, following his battle with cancer but I needed to show her that we do not ever give up! I submitted my application whilst I was on bereavement leave and somehow managed to get invited for interview (there’s that imposter syndrome!). However, my idea was clearly received well as here I am, an RCBC first into research fellow.
So, my idea; we were all so heavily affected by the covid-19 pandemic, and many services started to work remotely. Virtual wards became a sustainable way forward, keeping patients out of hospitals and within the comforts of their own environments. But could we do this with those people suffering with blunt chest wall trauma? Could they be managed appropriately and prevent recidivism? I sat with my mentor trying to iron out what I needed and it was so simple, we had never done this before with this patient group so thought it would be best to evaluate the service from its inception. In the meantime, I was very conscious that the September start date to my fellowship had come and gone, and I had no idea where to start. A slight delay in my university supervisor being told I had been awarded a fellowship meant that it took a little longer to sort my Affiliate staff member position. But this was sorted quickly (better late than never).
To make sure I was utilising my time as effectively as possible, I did what I could to gather as much literature around blunt chest wall trauma, virtual wards and patient reported experience measures, whilst also being in talks with the current virtual ward managers to establish how we include our blunt chest wall trauma patients within their service going forward. This all sounds plain sailing but one thing I’ve struggled with is not always having my designated day to work solely on my fellowship. Working in critical care as an experienced member of the physiotherapy team, I occasionally get pulled back to support less junior members of staff to ensure safety and provide their teaching opportunities. I’m trying to be braver to make sure I gain the time back that I lose. That’s a work in progress.
Thinking back to our first Community of Scholars day, I was racked with panic as other fellows were talking about their struggles with ethics or how far they already were within that process. We didn’t think I needed ethical approval due to my work being a service evaluation but with due diligence, I applied to my health board’s joint scientific research committee and they confirmed ethical approval was not needed, so mid-November brought the eagerly awaited start of the blunt chest wall trauma virtual ward pathway.
We are now January and we have had a multitude of blunt chest wall patients admitted to our wards. Our first patient from that cohort was admitted to the virtual ward in late November. I was ahead of schedule so a great start, but panic started to set in as the majority of patients coming through A&E were too complex to even be considered for management of their injuries via the virtual ward. I just had to remind myself that that’s ok, not everyone can be managed in this way and to try and trust the process. We would never have had the idea in the first place if we hadn’t noticed the varying degrees of disability caused by blunt chest wall trauma.
So that’s where I am, trusting the process and scouring A&E and the wards for any potential patients. The more people we can help get home and managed safely in their own environment, the better!
Project : Exploring the challenges experienced by the Intensive Care Unit (ICU) nurses during the organ donation process – a scoping review
Organ donation and transplantation have attracted an extensive interest among experts and policy makers in the past two decades. The ageing population and increasing incidence of chronic conditions are likely to increase the shortage of available organs globally. The critical shortage of viable organs means that patients have to wait longer for their transplant operations, and unfortunately some patients die whilst on the organ waiting list. Evidence suggests that family refusal rates for organ donation in the UK are still considerably higher than those reported from many parts of Europe.
During 2005, whilst employed as a staff nurse in the Intensive Care Unit (ICU), I looked after a 26-year-old male who died from an inoperable intracranial bleed. Following completion of the brain-stem death tests, the ICU consultant requested the Specialist Nurse Organ Donation (SNOD) be contacted, allowing the subject of organ donation to be broached with the family. The patient was left on mechanical ventilation, and their blood pressure was carefully titrated using vasoactive drugs and fluids under continuous hemodynamic monitoring. I ensured my patient received the best possible care in a dignified manner. The SNOD arrived, and I greeted the family to the ICU relative’s room. I felt anxious at the impending organ donation discussion that was about to take place with the family members. The death of a young person, who was previously fit and healthy, already shocked me to the core, and I experienced deep sadness. I was anxious facing the parents and family members in the room, because I believed that raising organ donation with grieving family would add further stress and anxiety to the family. Moreover, I was ill prepared to deal with the needs of the grieving parents.
The organ donation discussion was meticulously handled by the SNOD, but it wasn’t an easy conversation. I comforted the parents throughout the organ donation conversation and clarified queries they had around ICU care and transfer procedure. The whole process was conducted with utmost respect and dignity. At the end of the meeting, the parents positively responded to the option of donation with a ‘yes’. It was one of the most heart-wrenching experiences of my career which I will never forget. This experience also transformed my personal belief and attitude towards organ donation. Approaching the donor family and initiating a conversation about possible organ donation with them in the ICU while simultaneously continuing to care for and support the donor patient as well as the grieving family can be a most demanding and challenging task. Evidence suggests that the presence of nurses when families are approached about the organ donation process may ease families’ grief and thus facilitate the donor process, nonetheless, it’s an emotive concept that challenges nurses’ personal and professional beliefs. Therefore, I decided to undertake a scoping review to address the following questions;
· What are the challenges faced by ICU nurses while caring for patients during the organ donation process in the adult ICU settings?
· What are the reported or recommended support models or strategies that may support ICU nurses towards their role in caring for organ donors and their families during the organ donation process?
When the RCBC First into Research (FiR) was advertised, I had no idea how to make a start, but my line manager, who had successfully completed their FiR Fellowship last year, gave me morale boost and guided me through the initial application process. Then came the actual application process, the bit everyone hates, I guess. There’re two stages in the FiR application process: application for eligibility check and the submission of final application. The time gap between these two was tight, meaning you have to be super-organised and have right support from your supervisor. I was so lucky to have two amazing supervisors; they have been supportive during the writing stage of my application, especially the feedback I received on my draft application helped me a lot to produce a well refined application. Following submission, the waiting begins. Now and then, I kept asking myself – Have I justified enough why I wanted to undertake a scoping review in my application? Will I get a call for an interview? – I started to doubt myself. After 2 weeks of nervous waiting, I received an email confirming the date for my interview. What a relief!
It was an online interview, and to be honest I am not a very big fan of online interviews, but I had everything prepared; every possible question that I could expect from the interview panel. My top tips are – Read your application (over and over) and model your response. Get straight to the point, show positive vibe and stay positive during the interview. The interview went well, and after some waiting, I was finally offered the FiR fellowship – my next 12-month research journey was sorted!
My first project meeting with my supervisors and subject librarian was productive but was also quite overwhelming. There’s a lot of discussion around identifying appropriate databases, finding evidence, identifying search terms, involving public representative etc, and I must say, the first project meeting has provided me with a clear structure, it has taken away some of the anxiety about if I am doing the right thing, am I on the right path. The community of scholars’ (CoS) meetings which I attended offered an excellent opportunity to network with other fellows and hear feedback on the progress they’re making on their project. This also provided new insights into dissemination of project results. I can’t emphasis enough the importance of involving public representatives in a research project. My first meeting with the public representative, who had family experience of organ donation, was a real eye-opener, it enabled me to view the organ donation from family perspective, refine my searches and identify additional search terms for my review. The subsequent meetings with my supervisor and subject librarian all have been positive and encouraging.
The FiR is one day a week (protected study time…in theory!), but your other academic responsibilities carry on as usual, meaning you have to be extra careful with your time management. To be honest, I struggled with my time management at the initial stage of my FiR, but quickly learned lesson from it – Stop checking your emails in your FiR day! I even printed this out in big bold letters and placed it next to my laptop to remind myself every time. Although things are currently moving in the right direction, now and then, I do have self-doubts and question my research knowledge and skills – Am I approaching the research in the right way? What if things don’t go the way I wanted? Do I have plan B? I guess, it is OK to feel in that way, because I am new to research, there’s so much I still do not know or understand, and the learning curve is so steep. I am almost certain that I am not alone in this journey and there’re other fellows in the cohort might be feeling the same as me.
I have now completed my search strategy which has successfully gone through the Peer Review of Electronic Search Strategies (PRESS) process. It is like a quality assurance process which enabled me to identify appropriate subject headings, text words and retrieve additional studies. I am indebted to my subject librarian and the information specialist for their time and erudition. Also, my special thanks to my subject librarian for their patience and the time they spent on the EndNote tutorial. It allowed me to collect, organise and cite references as I was writing my protocol, it was a real game changer! I am pleased to say that my scoping review protocol is now live on the Open Science Framework ( https://doi.org/10.17605/OSF.IO/YF6CQ ), and I have also submitted the manuscript to the JBI Evidence Synthesis journal – which I am incredibly proud of. I want to thank my supervisors without whom I would not have been able to submit my manuscript.
Finally, I would encourage anyone who has an interest in research and would like to explore a burning question or conduct a study, to join RCBC FiR Fellowship. The journey with the RCBC FiR Fellowship so far has been positive and has helped shape my thinking process and challenge me. It has also allowed me to ask questions from a different perspective. I will soon be moving to the sifting process, full text screening and data extraction phase to discover more about the challenges experienced by the ICU nurses during the organ donation process. I hope to keep sharing updates at the future CoS meetings, so keep an ear out!
Thank you.
Greetings fellow fellows, accidental discovers of this blog and my Mum (who is probably the only person who reads everything I write or publish online (promise I’ll call you Sunday Mum!)) In this blog, I am here to share my reflections on the first three months of my RCBC First into Research fellowship journey.
So lets start at the beginning, I’m Martin, a registered nurse with a clinical background in emergency medicine. I have worked in numerous Emergency Departments in Wales and as I write, my current job is the BSc Adult Nursing course leader at the University of South Wales. My First into Research project is titled electronic Practice Assessment Document ( ePAD) what works, for whom, in what circumstances and why? A realist scoping review.
So why this project? Well in Wales, student nurses use an electronic Practice Assessment Document (ePAD) to document learning, assessments and progression whilst on placement. Placement is a key part of nurse training and makes up 50% the overall course. The ePAD was introduced in 2020, it is an online document that contains a set of common assessments that student nurses must meet. Nearly all universities delivering pre-registration nurse education have moved to electronic Practice Assessment Documents for the documentation of assessment and progression in clinical practice (Devlin 2023).
Research into the use of ePADs (or ePortfolios) have shown many benefits including, sharing of information between stakeholders, being a safe repository, providing quicker feedback and authenticity due to them being a live document. However, the same studies have also shown that ePADs can be difficult to use and time consuming to complete particularly with limited access to IT (Andre and Cole 2015, Birks et al 2016, Yang et al 2016 and Madden et al 2019)
Following the Pawson and Tilley (1997) approach to realist research, my scoping review would analyse data that has already been publish in relation to electronic Practice Assessment Documents to try and explore what parts of ePADs work in what circumstances and why. This data would be used to create and refine a program theory that is a description/diagram of what ePADs comprise and how they are expected to work (or not work in real life). An advisory group of stakeholders such as nurses, students, lecturers and the public would be used to develop and check the evolving programme theory. The final program theory will be used for the improvement of the ePAD along with the learning, assessments and progression of student nurses in practice.
Now that’s all great stuff, but what is it actually like being a fellow I hear you scream? Well, I’m glad you asked, I am here to spill the beans, let the cat out of the bag, dish the dirt and betray the secrets of the fellowship (spoiler alert there aren’t any unless you count the lovely raspberry cheese cake that only I was allowed to have at our formal dinner).
I’m three months in and whilst I’m still setting the all-important ground work for my project it will soon be blossoming into a beautiful rose. Right now picture more of a thorny shoot coming out of the ground. When I started this research journey I was like a cat in a room full of rocking chairs – nervous and slightly jumpy. Walk in my two supervisors. Like research Gandalf’s they have guided me through the difficult terrain that is the first few steps of any research project. Fortunately, (or unfortunately) their offices are in the same building as mine and regular weekly check-ins have been added to the RCBC First into Research diary.
Recruiting participants for a
stakeholder group has had its hiccups. In fact, it’s been like herding cats in
a room full of rocking chairs. However, the 8th of December
will be inaugural stakeholder group meeting with three other meeting set for
2024. A big thank you to the Health and Care Research Wales public involvement
team who have made the process of recruiting member of the public straight
forward.
The community of schoolers
event have been a great opportunity to network and learn. The days don't just
focus on developing your research skills but also focus on the soft skills such
as balancing workload, setting goals and, well, eating frogs (no frogs have
been eaten in the production of this blog or any RCBC research project). The
next community of scholars event is set for January in Wrexham where I will be
presenting my developments so far, with a very special guest speaker Ryan Reynolds
(if you are reading this Ryan and around before the Crawley Town game please
reach out).
So here’s to the next three months, to searching literature, realist analysis, a trip to Wrexham, more cats on rocking chairs and the ongoing quest to answer: electronic Practice Assessment Documents. What works, for whom, in what circumstances, and why?
References
Andrews, T. & Cole, C. (2015) Two steps forward, one step back: The intricacies of engaging with eportfolios in nursing undergraduate education. Nurse education today. 35 (4), pp 568–572.
Birks, Hartin,
P., Woods, C., Emmanuel, E., & Hitchins, M. (2016). Students’ perceptions of the use of eportfolios in nursing and midwifery
education. Nurse Education in Practice, 18, pp 46–51.
Devlin N
(2023) e-Professionalism and ePortfolios – Are They
Compatible Within the Undergraduate Nursing Curriculum? Patient education and
counselling 109. https://doi.org/10.1016/j.pec.2022.10.062
Madden K,
Collina E, Lander (2019) Nursing Students’ Perspectives on ePortfolios: Themes and Preferences Compared. International
Journal of ePortfolio 9 (2), pp 87-96
Yang M, Tai M
& Lim CP. (2016). The role of e-portfolios in supporting productive
learning. British Journal of Educational Technology, 47(6)
pp1276–1286.
A significant proportion of neonates and children in intensive care have genetic conditions. Rapid whole genome sequencing (rWGS) is an effective way to improve outcomes for acutely unwell children by reducing the need for multiple diagnostic tests and invasive procedures, facilitating earlier treatment decisions, and preventing repeat inpatient admissions.
In April 2020, the All Wales Medical Genomics Service (AWMGS) launched the Wales Infants’ and childreN’s Genome Service (WINGS). WINGS is the first NHS rapid diagnostic trio WGS service for critically ill infants and children in the United Kingdom. Currently, this test can yield a diagnosis in around 40% of cases.
• A diagnosis must occur quickly to be relevant for clinical decision-making
• To facilitate rapid analysis, strict filters are applied to prioritize variants
• This balance is struck to find diagnoses quickly without being overwhelmed by the large amount of data
• Diagnostic yield can be improved by ~10% after re-analysis of the existing data in a research setting [1]
Traditionally affiliations with ambulance services and pre-hospital care often evoke visions and perceptions of the fast-paced, rapid moving ambulances and out-of-hospital cardiac arrest scenarios. The concept of emotional wellbeing in the past has perhaps been overlooked in ambulance services, not out of fault of individuals, management, or organisations, but because of the misconceptions that ambulance work was a male dominated occupation and the notion of utilising emotional labour to manage emotions was probably favourable. In comparison to other areas of healthcare, pre-hospital care is still considered to be in its infancy in the research arena in comparison to other specialities like nursing and mental health. This for me brings an exciting element into being a pre-hospital care researcher.
The last year, I have been forever provided comments by colleagues and friends about doing my PhD, saying ‘you’re mad!’ or I am asked, ‘what do you plan to do with it after?’. I could never answer them properly. All I could kept doing was smiling and saying, “but I’m enjoying”. The first 9 months in particular were extremely difficult, navigating through ethics, filling out endless application forms and finding my feet back into academia. I have always lacked self-confidence in my academic ability and its been even more difficult during COVID with the inability to attend libraries and the more familiar university buildings where I’m able to get into ‘Uni’ mode.
As I sit and write this entry for the Community of Scholars and the RCBC I am still unable to properly answer where I am going, but I know where I am now and I know that I’m enjoying. If you would have said to me 5 years ago, I’d be doing my PhD I probably would have laughed at you. I think it’s taken me a while to understand that, sometimes its ok not to know the direction in which your headed but remembering why you started and remembering to enjoy doing what your doing is important. I firmly believe in that.
Research Q
: Are video-based consultations with children investigated for Autism Spectrum Disorder (ASD) appropriate and reliable? A mixed methods approach.
Background : Covidhit and face to face assessments were suspended. The health board rolled out a telehealth platform but it wasn’t as simple for my team to just move online because the ASD assessment process follows NICE clinical guidelines so we needed to have evidence to make that move. NICE states ‘assessment through interaction with and observation of the child’.
I assumed there would be evidence. I carried out a literature review and was surprised to find there isn’t much. My research question was born –it is a live clinical question for me. It is a current gap in the evidence base that needs to be addressed.
The first day of being a PhD student I woke up in a bag of sweat and spent most of the day opening computer files and google wondering what I was supposed to be doing. Then the questioning started - am I cut out for this? Can I actually do this? Imposter syndrome was starting to set in, and this was only day 1!
This thankfully got easier, I remembered why I was so passionate about my topic, the pain and turmoil of not only my grandfather’s death from dementia, but those who I cared for over the years going through the same journey as mine, and I want to change this by any means possible. Even the slightest improvement that this research can make will be significant to the quality of care for those people and their family.
The reason I choose to study part time is the fact that I am already juggling a bunch of other commitments: work, social life, family. Within the first months of the journey I already felt exhausted, the pandemic ultimately took its cause on everyone – so many of our ‘normal’ routines were impossible and this I struggled with. Social gathering, work catch ups, community of scholars and student support now being all online sometimes made the whole journey a little overwhelming.
Looking after my mental health and being on top form therefore became my priority, I began to spend more time walking. Using this time to reflect, reconnect and relax. I am lucky enough to live in a rural area with plenty of walks within nature and this time allowed me to stay fit and balance my moods. Whilst out walking I would start to digest the current stage of work related to my PhD and would ultimately find answers that I could not find at my desk, it would also help gather and inspire my thoughts for my work. It made not only my research better but my work life, family life and social life much easier to contend with.
The first couple of months of this journey brought me exhaustion and anxiety but also brought me excitement and enthusiasm, so to anyone who is starting out, thinking about starting, or going through the same thoughts as me - number 1, you’re not alone, number 2, if your passionate enough about what you want to achieve its worth every step! Find your inner peace and sanctuary that will help carry you through, for me this was walking but for you can be anything you like! Just go for it.