30 January 2006

The University of Glamorgan is inviting people to take part in an education project called Telling Stories: Understanding Real Life Genetics.

  • Do you or a member of your family have a genetic condition?
  • Are you are a healthcare professional caring for people with genetic disorders?
  • Could you tell your story and be part of a website that will teach nurses about genetics and genetic conditions?

What is the project about?
We know that health care professionals such as nurses, midwives and health visitors should be educated in genetics. It can be difficult for them to make the link between what they are taught and how this relates to the people they may be looking after. We know that hearing real stories about people’s experiences can make a difference in helping them to understand genetics. This project will gather real life stories from the public and professionals to show the impact those genetic conditions have on real life. We hope it will help health care professionals to gain a better understanding of genetics in practice.

Who is doing this project?
The project is being carried out by the University of Glamorgan, the Genetics Interest Group and the University of Plymouth. All the team are involved in education and are linked to the NHS Genetics Education and Development Centre. Two members of the team are also nurses with a special interest and experience in genetics. The project is funded by the Wellcome Trust, a registered charity.

Why am I being asked?
The team is asking people working in the health service, or in support groups, to help find people who might be able to help. You might have a valuable story to add to the project. This could be because you or someone in your family has a genetic condition, or because you work with people who have a genetic condition. We would like to hear about your experiences – both good and bad.

Do I have to take part?
It is entirely up to you. If you decide to take part after reading this information, you will be asked to sign a form so the team has a record of your consent. If you decide to take part, you are free to leave the project at any time, without giving a reason. Whether you decide to be part of the project or not, the care you receive from the health service will not be affected in any way.

What will happen if I take part?
You will be asked to tell your story – long or short – either by posting or emailing it to the team, or by having an interview with one of our team members. If you have an interview, the conversation will be either video taped or audio-taped. Two or three questions will be asked to guide you. Your personal details (such as name and address) will not be attached to your story. With your permission, the story will be put onto an educational website for others to see and we may use some clips from the tape or video. If you decide to change your mind about being involved, we will destroy the tape or the written story sent to us. You can also ask for your story to be removed from the website at any time.

What are the possible risks involved?
Because genetic conditions can make such a difference to life, sometimes people find it hard to talk about some aspects of their story. The interviewer is trained to give you support during the interview and you do not have to talk or write about anything you find uncomfortable. The plan for the project has been carefully considered and approved by the Ethics Committee of the School of Care Sciences, University of Glamorgan.

What will happen to the results of the project?
The stories will be edited by the project team and then put onto the website of the NHS Genetics Education and Development Centre, with links to explain more about the condition and support group contacts. The stories will be used by nurse teachers, by nurses themselves and other health professionals, as well as the general public, to help improve their understanding about genetic conditions.

What now?
Feel free to contact the University of Glamorgan via email or its website (details below). You will first need to email the team with your contact details so they can send you a consent form. You will be given a copy of this consent form to keep when you meet the team for an interview, or through the post.

Once the team has received your contact details, the Project Officer will get in touch to discuss with you how they can collect your story. If you come to us for an interview to tell us your story, we will pay for your travel expenses and provide some refreshments.

Before you make a decision about helping the University Of Glamorgan, you can discuss any concerns you have with the Project Officer, who will be happy to answer any questions. You might also discuss it with family or friends.

If you require any further information, you can contact:
Ms. Kalbir Kaur-Mann (Telling Stories Project Officer)
School of Care Sciences, University of Glamorgan, Pontypridd, CF37 1DL

Telephone number: 01443 483141/483185
Email: kkaurman@glam.ac.uk
Website: www.glsm.sc.uk