TREATMENT BURDEN IN STROKE PROJECT

Research Advisory Group

A Guide for People Thinking about Getting Involved

 

What is the Treatment Burden in Stroke project?

There are over 1.2 million stroke survivors living in the UK and 9 out of 10 are living at home six months after their stroke. This research project aims to develop a questionnaire to measure the difficulties that people with stroke may face when managing their health in Glasgow.  We are based at the University of Glasgow in the Institute of Health and Wellbeing. The Research Advisory Group for the project will help to improve the design and undertaking of the research project and give the researchers support. It will be a mix of stroke survivors and health care professionals such as doctors, nurses and therapists. The group will be friendly and welcoming.

 

If I get involved what will I be doing?

You will join the group as a volunteer stroke survivor representative to advise the researchers carrying out this project. We want your view of research topics and your practical suggestions about how to improve the research project, from the perspective of someone who has suffered a stroke.

 

What skills do I need?

Everyone will bring different experience and skills. It is important that you are interested in finding ways to improve treatments and health. You must have enthusiasm, and be willing to speak up about your views.  You will have experience of stroke.  You don’t need medical or scientific expertise – other members of the group have that.  What you bring to our group is a member of the public’s point of view, for example, what it’s like to manage your health after a stroke.  If you have skills such as web design, marketing, writing or scientific knowledge; we’d be delighted to hear about them, but these are not needed. The aim is to make sure that research is carried out in the best interest of patients’ and that it meets the needs of the public who then get a proper chance to hear about the results.

 

Do I need to attend meetings?

It’s often good to go to meetings so you can meet the other folk face-to-face, but this is not always possible. You may be working or have childcare commitments, or you may live far away; so we can keep in touch with you by email or telephone.  There will be about twelve members in the group: five stroke survivors; a stroke consultant; a GP; a stroke nurse; a physiotherapist; an occupational therapist; a speech and language therapist; and a psychologist.  We welcome all stroke survivors, including those with physical disabilities. Those with aphasia and those that use a wheelchair are welcome. The group will meet approximately twice a year in Glasgow.  Travel costs will be reimbursed at the meeting and tea /coffee provided.

 

What can I expect from the Research Advisory Group?

  • We’ll only ask you to do things you’re comfortable with and feel you can deliver.
  • We’ll help you find a role that suits you.
  • We’ll give you plain and clear information.
  • We’ll send information in plenty of time.
  • When you’re going to a meeting, you’ll be told what the meeting is for and what is on the agenda in advance. You‘ll be told who will be there and what is expected of you. After the meeting you should be asked to comment on the experience.
  • You may claim for travel to meetings and other agreed expenses.
  • You’ll be offered training and support if you need it.
  • You’ll be told about the difference your involvement has made.

 

 

What will the Research Advisory Group expect from you?

We hope you will

  • Play an active role in discussions.
  • Respect the confidentiality of information discussed.
  • Communicate effectively, in person or by email.
  • Meet deadlines.
  • Let us know as soon as possible if you can’t do something you’re asked to do.
  • Feel able to give feedback about your involvement.
  • Tell us if you want to step down.

 

Interested?

If you want to find out more about becoming involved please email katie.gallacher@glasgow.ac.uk or phone on 0141 330 8323