HD research: Treatment & prevention

New research project: Quality of Life Issues in Chronic Illness

February 2010

Everyone likes to have their opinions heard and be provided with an opportunity to voice their views. This study is inviting you to do just that. To say what you want, how you like, in the manner most suitable, and most importantly - it's all about you!

What is the aim of the project?

An exciting new research project is beginning at the University of Exeter investigating lived experiences in neurodegenerative illness. We endeavour to get to the heart of what matters most to the people living with neurological conditions, such as Huntington's disease.

The research is interested in discovering key life moments and turning points so that the development of the illness and how this impacts your life can be captured. How have you managed your condition with the help of health care professionals, various organisations and others around you? Do you feel your needs are met by health care providers? What more could be done? What’s important to you? It is the intention of this project to research how those living with HD can lead the discovery of ways to maintain or increase health related quality of life for those affected in the future.

Who am I looking for?

This research is focusing on those that might have had to make big life style changes. For this reason those people who have been in the past, or maybe are still in some capacity physically active are being sought. The specific activity is not important, for example, recreational joggers or hikers as well as competitive runners are free to participate. A current or past undertaking of regular physical activity, a minimum of 3 times per week, is all it takes to qualify you for this research. Ideally you should be in the early stages of the illness, and be willing to talk about experiences both past and present to facilitate in painting a vivid picture of your life.

What will I be asked to do?

There are 2 ways for you to take part in this research:

1) Through consenting to meet with the researcher, in a place of your choice and comfort, to undertake an interview. This would be very informal in nature, with the focus being on what you would like to tell me about your experience with illness, and how this has made an impact on your life.

2) Via 'pen-pal' correspondence. We appreciate that some individuals, dependent on the progression of the illness, may find it easier and more convenient to converse through e-mail or by another written means. Therefore, written correspondence is a method of communication this study welcomes and provides a greater opportunity for everyone to participate. If reading this brief overview of the study has interested you, and you think you might like to pursue this further, the contact details of the researcher are below; I invite you to get in touch.

Please feel free to enquire with any questions, or request a more detailed information pack to be sent to you.

Finally, thank you for your time, and we look forward to the possibility of hearing from you.

Contact details:
Amanda Dean
School of Sport and Health Sciences
University of Exeter
St Luke’s Campus
Heavitree Road
Exeter, EX1 2LU

E-mail: acd205@ex.ac.uk