Dr Rebecca Ellis, Swansea University
I moved to Swansea in 2018 to start my PhD in Human and Health Sciences, focusing on improving care pathways for autistic children in Wales. A care pathway includes screening, diagnostic assessment and post-diagnostic support. My original plan was to create an online questionnaire for parents, followed by focus groups with some of these parents to establish current enablers and barriers to accessing care, plus identifying areas for improvement within the pathway. Unfortunately, the COVID-19 pandemic started shortly after the beginning of my second year.
These are some of the ways in which my research was impacted by COVID-19:
The questionnaire, despite being online (released late March 2020), was still impacted, as parents of autistic children now had their child/ren at home and had less time to participate.
In order to counteract low participation, I kept my questionnaire open for longer, creating delays.
The second stage, focus groups, were changed to one to one interviews. This required a new ethics application.
The Ethics board were meeting less frequently. This was perfectly understandable but caused further delays to my data collection.
I was originally going to travel to various parts of Wales to conduct focus groups. Now I was working from home, with intermittent Wi-Fi, trying to help some parents navigate Zoom, Teams and Skype for the first time.
I felt one of the key opportunities within a PhD - engagement - was now missing. Opportunities for public speaking, attending conferences, travelling, meeting new people, and developing wider research connections had changed or disappeared entirely. It seemed there were new issues and delays to circumvent every month, and my motivation dropped significantly.
So, I started thinking about how I could get the most out of my PhD experience, within these new circumstances, with a focus on communicating my work to a wider audience. I started engaging with my work in a more creative way hoping this would encourage me back into working. Here are some of the ways I chose to be creative:
Poetry - FameLab
Firstly, I decided to take part in FameLab, a science communication competition in which you have three minutes to explain an interesting element of your field (not just your research) to a public audience. I had previously found it beneficial to speak out loud about my work, to myself or others, to help me clarify my thoughts. The competition pitched itself as friendly and it certainly was. Even when it was moved online due to the pandemic there were still a community of people willing to connect and share their work. I wrote my presentation in the form of rhyming couplets, which really forced me to highlight the most important points I wished to make and be selective about my language. Here's an example in which I explain my next steps for my research:
So next I'm off out, interviews, an information collector.
An inspector, a connector of those in the third sector.
Who work to bridge these gaps, broker knowledge, form the bond
In our care pathway, I hope they respond.
Correspond with me because it's my full intention,
To develop this holistic, whole system, intervention.
Having won the Swansea heat with a poem about my PhD, and the Welsh heat with a poem about masking within autism, I moved on to the UK final in May 2020 to present a poem on fake news (starts at 48.48). I won the main prize and the audience vote. I was particularly moved by winning the audience vote, as it meant I had reached people in a meaningful way, as reflected in the live comments which were broadcast alongside my performance. Following the UK win, I proceeded through to the international final, for which I presented a poem on how COVID-19 how impacted my research process, and placed runner-up.
The focus on the competition kept me on track and gave me the motivation to work on writing my thesis again. Most importantly, the peer interaction and comradery from other contestants, discussing the highs and lows of postgraduate life, reduced the isolation that the pandemic, and working as a sole researcher, had created. I have since performed at the Cheltenham Science festival, meeting other science communicators, and working with them on collaborative projects, and been a judge of subsequent Famelab competitions.
Drawing – Neuro Divers
I had decided that in order to better understand the data I was working with I would create visual representations of what parents had said to me in their interviews. As my research is on the development of better diagnostic care pathways within autism care, I visually mapped out the pathways of participants to better visualise the differences in their experiences. This was much more accessible to me and I thought it might be the same for participants, so I ended up sending these out as a tool, alongside the debrief form, to enable them to double check I'd represented their experiences well enough.
The following is an example of what one of these care pathways looked like, although this one is made up, as I can't share the actual data.
The parents were very receptive to these and the inclusion of these pathways within my thesis both strengthened my arguments and made my work feel truly like it was mine.
During my PhD, I also decided to further my science communication output by breaking down myths and misconceptions surrounding autism using the social media platform Instagram (@Neuro_Divers). I had already been creating a set of cartoons based on my PhD experiences so thought I could do the same, but with scientific content. Here’s an example of a cartoon I'd drawn for fun during my PhD.
I took complex neurodiversity-related topics and reduced them down to key points, much like I had done for FameLab, to fit the 10 slide restriction for a post. I achieved this by determining the key message I wanted people to take away from the post, picking particularly interesting findings I wanted to include and developing a narrative around this, much like you would with an essay: introduction, main arguments, discussion points, conclusions drawn and references. Here's one example of how I did this.
Using this platform, I was able to interact with the wider neurodivergent and disabled communities and learn about topics I otherwise wouldn't have. I put out a request for post ideas to my followers and have since covered topics such as: Prosopagnosia (inability to recognise faces), stigma, emotional regulation and media representation.
My point is, there is nothing wrong with engaging in your subject area through more creative means, especially if it feels right for you. This is something I had to learn as there is a lot of bias out there as to how to research "correctly" and how to learn the "right way". There is also nothing wrong with bringing yourself into your learning process if you think it would benefit you. You will already have done so to a certain extent: we find ourselves working within our chosen fields for a reason, whether it’s a personal connection to the work, our fascination with the subject, a personal investment in the outcomes or a belief that it is important work. I am autistic myself and experienced the diagnostic process first-hand, so I'm obviously going to be invested in making that experience better for future generations of autistic people. Why then, should we shy away from acknowledging a more holistic involvement of ourselves within our work?
There is no incorrect way to learn if it benefits you. Being creative is not wasting time and engaging with the public is a vital part of our work as researchers. What started as me booking a workshop on public speaking, to get some structure back to my day, led to me competing on an international platform, incorporating my own drawings into my thesis, starting my science communication Instagram account and opening my neuro-positive Etsy shop - all during a pandemic. So, take that photo, upload that video, be inspired by the work of those around you and use your own creativity to inspire others. You never know where it'll lead.
Tips to explore creativity in research further
1. Have a look at what’s on offer at your university with regards to additional training and opportunities for sharing your research.
2. Think about what skills you have, or what creative endeavours you enjoy outside of work. Is there any way you could combine the two?
3. Look for examples of when other researchers have gone beyond the "traditional" or "academic" methods of data collection and dissemination. I recommend the following books as starting points:
Dawn Mannay, Visual, Narrative and Creative Research Methods: Application, Reflection and Ethics (London: Routledge, 2016).
Helen Kara, Creative Research Methods in the Social Sciences: A Practical Guide (Bristol: Policy Press, 2015).
4. Think about how you best learn. When were you last really engaged in a topic? How did it capture your attention? Can you replicate this in the way you share your research?