My research project focused on understanding the perspectives and attitudes of people with Parkinson's towards neurostimulation devices such as Occipital nerve stimulation (ONS) as a non-drug treatment modality to improve cognition issues in Parkinson's. My project consists of two parts, an online questionnaire on the attitudes and thoughts of people with lived experience of Parkinson's towards non-invasive and non-drug approaches and six semi-structured in-depth interviews conducted online. I am grateful to my supervisors Professor Iracema Leroi and Professor Sven Vanneste for supporting my research, offering me guidance professionally and personally and Joel for helping me adapt my timeline.
I started my research journey in June 2022 by visiting the Lab for Clinical and Integrative Neuroscience (Lab CLINT) which is part of Trinity College Institute for Neuroscience at Trinity College Dublin. During my visit, I tried on the ONS device and received a sample treatment session lasting 15 minutes which enhanced my understanding of ONS technology. Furthermore, I had the unique opportunity to talk to the authors of the publications on ONS I consulted when writing my research proposal. As I did not receive the ethical approval required for me to start collecting data, I spent my summer working on the feedback given by the Data protection officer and ethics committee, developing and field testing my survey and interview questionnaire, finalising my study protocol and interacting with people with Parkinson's through webinars organised by Parkinson's Association Ireland and Dementia Trials Research Network respectively.
A data protection impact assessment, level II ethics application, participant information leaflet, explicit consent form, study poster, and a draft of my survey questionnaire were among the seven items I had to submit as part of my ethics application. I took away two significant lessons from this experience. I changed my perspective on feedback which I used to consider as form of criticism. During the ethics application process, I kept getting feedback that I had to respond to. I gradually learned to accept the feedback as constructive criticism instead of viewing it as a sign of personal failure because my work was inadequate. Second, I challenged the inversely proportional relationship, which I believe existed between the asking for help and my academic self-worth. The entire ethics application process required more information and expertise than I possessed, so I depended on the advice of others. The hesitation and reluctance I previously had when asking for help gradually faded, and I started emailing individuals proactively. This was in line with my PDP objective of connecting with professionals in my field to learn more about Parkinson's.
Along with my supervisor Prof Leroi, I presented a webinar titled 'A discussion of the cognitive and mental health challenges often faced by people living with Parkinson's, including introducing new therapies for cognitive impairment and information about a new study conducted by Trinity College Dublin.' This was the highlight of my summer break. I applied the public speaking techniques we learned during the LIR Workshop in the Lead Day 2 session at Trinity. The webinar was a humbling moment for me as I discovered that this may be an 'experience' for me but for some, the research I am doing might help support the development of clinical trials. These trials could be open up opportunities for people with Parkinson’s and their caregivers actively looking to try something 'new' as other interventions may have failed. The webinar experience affected me deeply in four ways.
Firstly I realised that I needed to take my research more seriously as it does mean something to people beyond myself and my supervisor. Secondly, I need to keep the lovely people who attended my webinar at the centre of my research and not get lost in the paperwork of research approvals! Thirdly I realised that I needed to read and learn more about neurodegenerative diseases and caregiving to better understand my future participants. Finally, by interacting with people who had other Parkinson's plus conditions like Lewy Body disease, I learned that I needed to be mindful of the diversity in lived experiences of people with Parkinsonian conditions. To learn more, you need to seek out people. William Ostler once said 'Listen to your patient, he's telling you the diagnosis." This is relevant to my research as I began to recognise that to make my research accessible and inclusive, it's best to talk to the people I want to design the research for.
To sum up, I learned how to handle disappointment and minimise the feeling of "straying" from the path during the Laidlaw journey. In addition, I've come to understand that when things don't go as planned, it's critical to reflect and cultivate courage and self-efficacy. I believe these are three essential qualities in a leader that enables them to execute their vision and remain committed to their goals. Working on my survey design and study protocol over the summer, presenting my study in two webinars, as well as taking an online course on qualitative research, made me realise that I can develop leadership abilities even when I am working by myself and remotely. It's a form of personal leadership! My next step would be to conduct the surveys and interviews and analyse the data. No matter how long it takes, I want to do an excellent job not just for my personal and professional growth but for my supervisors and future participants of my research who have invested their precious time and belief in my research and myself.