Research, I love you. Research is an activity that we all do as part of our daily lives to help us feel prepared and make wise decisions. Sometimes we research things like what TV we should purchase, or we might research interesting places to visit on a day trip. Then, there are people like me who really love the process of researching and spend a great deal of time researching everything! My name is Suzanne Glover and I have recently joined the Pathfinders Neuromuscular Alliance team as a Research Officer.
I am 28 years old and I have Spinal Muscular Atrophy Type II (SMA), a genetic muscle wasting condition. SMA affects all of my main motor muscles resulting in them becoming weaker. I have recently started a treatment that aims to stabilise the progression of my muscle weakness. Although it is a little daunting to take part in something so new, I am feeling positive and hopeful for myself and others with these exciting therapies beginning to emerge. Day-to-day, I use a wheelchair and lots of assistive technology to enable by independence, along with being supported by my team of carers, family, and friends.
I am currently in the final stages of completing my PhD at Ulster University, a research study that has examined resilience and emotional intelligence in family carers of those with Duchenne Muscular Dystrophy (DMD). Overall, my research has highlighted the ways in which that families adapt and cope with the challenges that living with DMD brings. The research suggests some ways that clinicians and organisations can support families from the point of diagnosis onwards. I thoroughly enjoyed my experience as a PhD researcher, and I look forward to a career with many more research opportunities.
And so… bring on Pathfinders’ new research project! Pathfinders is conducting a new piece of research investigating the experiences of transition to adulthood for those with DMD. The research will explore topics such as how people with DMD view themselves and the world around them, their perceptions of quality-of-life and future life ambitions. It also aims to highlight some of the barriers that make achieving ambitions challenging for people with DMD. We hope that this research will aim to inform current understanding of life with DMD. In turn, influencing the future direction of Pathfinders and beyond.
The majority of previous DMD research has included those with DMD and their family carers as the research participants. This is really useful for gaining an understanding of what it is like to have DMD and to try to capture important factors when supporting individuals and families. Pathfinders’ new research aims to take this a step further and include people with DMD as Co-Researchers. Co-researchers will play an active role in designing, conducting, and analysing the research project. We know that this will make our findings even more fruitful and insightful as it will be shaped by those with DMD. The opportunity to take part as a co-researcher will also provide a valuable experience of researching.
I hope this blog has given you some insight into myself and the upcoming work of Pathfinders. If you would like to find out any more information about taking part in the research or becoming a co – researcher please feel free to drop me an email on firstname.lastname@example.org.
Watch out for more updates!