Claire Cooper
Cerebral palsy (CP) is the most common childhood-onset motor disability, and thus the focus of much research, support and healthcare is often aimed at paediatric level. However, although CP is medically described as non-progressive, the experience of CP changes as an individual grows up. Today, most people living with CP are adults, and yet research and support provision in adulthood is lacking. This research follows on from previous studies known as SPARCLE (Study of PARticipation of Children with CP Living in Europe), which focused on participation and quality of life in childhood (SPARCLE 1) and adolescence (SPARCLE 2). The current study will use a survey to gather new data on adults with CP in Northern Ireland and compare this longitudinally with previous cohorts. A comparison group of typically-developing adults will also be recruited to compare the experiences of disabled and non-disabled adults. The main research aim is to understand how social participation and quality of life are impacted by the experience of impairment for adults with CP.
My project is funded by the Department for Economy and is a Collaborative Award in Science and Technology (CAST) Studentship, in partnership with Up - The Adult Cerebral Palsy Movement.
What is your ideal Research outcome?
My ideal research outcome is to make a difference for adults with CP in Northern Ireland. Support provision post-18 is currently lacking, with individuals moving from having a multi-disciplinary team in childhood to having to access GPs for medical advice in adulthood. My research findings could highlight areas of need for adults in NI and we hope to be able to make recommendations to healthcare providers for how to best support adults with CP.
Supervisors
Dr Mark Linden and Dr Claire Kerr
Why did you choose this PhD and why at Queen’s?
My academic and professional background is in Disability Studies and working with adults with learning disabilities in supported living settings. Through this personal experience, as well as seeing the difficulties and challenges faced by close family members and friends with various impairments, my passion for disability rights and improving access to the environment has grown. Growing
up in Northern Ireland, the excellent standards of QUB have always been known to me, so when I made the decision to work towards a PhD, it made sense to start with Queen’s. The title of this PhD grabbed me instantly as the main topics, social participation and quality of life, are exactly what I have always hoped to be able to positively impact for disabled people in NI.
How have you been supported at Queen’s?
First and foremost, I couldn’t have asked for a better supervision team. We have regular meetings to catch up on my progress, giving me the opportunity to ask questions and seek advice, as well as to plan for whatever is the next stage of the PhD journey. Their support is always readily available, and they help me to consider my workload as well as finding new opportunities to attend conferences and gain experience in many areas of academia. Within the School of Nursing and Midwifery, we have regular masterclasses, workshops and guest speakers on a range of topics from how to conduct a randomised controlled trial, to how to use mindfulness meditation throughout your PhD. The workshops and support available from QUB Graduate School are also excellent. There are plenty of activities to choose from, including writing bootcamps, how to effectively tell your research story, tips on poster presentations and preparing for working life after the PhD.
In what ways have you developed at Queen’s?
When I began my PhD at Queen’s, I already had some knowledge of conducting research during my Masters. However, the independent nature of the PhD has taught me so much about time-management and managing your workload alongside your personal life. I have become a lot more independent in terms of setting my own goals and thinking ahead, rather than relying on a supervisor to tell me what to do next. I have also grown in my confidence when giving presentations in seminars and conferences, and have worked on my interpersonal skills to improve my network with peers in the school, as well as academics in other universities and organisations.
Can you describe the postgraduate community in the School and at Queen’s?
We have a diverse community in the school, not only by nationality but also diversity in academic backgrounds. Coming from a social science background, I was worried I would struggle to fit into the healthcare circles, but instead I have found that my background adds a different perspective to my research and also results in interesting conversations with other postgraduates as we learn from each other. We have regular coffee mornings where students and staff get together for tea break and chats, and while we are still a blend of working in the office and working from home, we find ways to get together and socialise after masterclasses or other university events.
Where do you hope your PhD will lead?
My plan at the moment is to stay in disability research by finding a post-doctoral position. I’m currently making connections around the globe with like-minded researchers, so who knows what country I will end up in. My passion is for research, and for making change for disabled people with that research, so as long as I’m on the path towards that, then I will be happy!
Anything else you would like to add or advice to new PGR students?
Don’t underestimate the importance of making connections with other students and staff in the school and the wider university. Not only are these the people who will get you through the inevitable difficult days, but these could be your future colleagues who will lead you to new opportunities.