Participant information Sheet (Young People)

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Mechanisms of change in intensive group intervention for teenagers who stammer.

You are being invited to take part in this research project. Before you decide to do so, it is important you understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Ask us if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part. Thank you for reading this. 

This research project aims to find out how taking part in the Talking Out Residential can lead to you feeling differently about stammering. 

The project is being carried out by Ben Bolton-Grant. Ben is a speech and language therapist and a PHD student at Leeds Beckett University. This project is being carried out as part of Ben’s PHD. 

You have been asked to take because you are going to be going on the Talking Out Residential in October and we are interested in finding out about what taking part in the residential is like. 

If you choose to take part in this research, there are different ways to take part. 

1. Ben is going to join in with the residential in October and watch how the group runs. He will make notes about what he notices. He won’t use your name or anything else that could be used to identify who you are in the notes. This means you don’t need to do anything extra. 
2. Ben will be given a copy of the assessments you fill in during the residential. These are a normal part of the residential and you will be asked to fill them in even if you don’t want to be part of the research project. This means that you don’t need to do anything extra. 
3. Take part in focus groups during the residential. A focus group is a small group discussion during which Ben will ask the group questions about what the residential has been like that day. There will be one focus group each day of the residential. It will last no more than 1 hour and you can choose whether or not you want to take part each day. The conversation will be recorded so that Ben can listen back to it later to analyse what everyone said to help work out how the residential works. These recordings will be kept secure and not shown to anyone else.
4. Photographs and videos will be taken during the residential (if you have agreed to this on the referral form). You might be asked to look at them during the focus group to help everyone remember what happened during the day. 

No. 

It is up to you to decide whether or not to take part and any part of this research. If you want to just volunteer for some parts and not others, that’s fine too. 

Yes. 

You can still go on the residential if you don’t want to take part in the research. Your place on the residential and the activities and support your receive during it will not change if you do not wish to be part of the research. 

Yes. 

You can change your mind and opt out of the research. You can do this up until 5 days after the residential has finished. After this point your data will have been combined with other people’s data and it will not be possible to remove it from the analysis. 

Taking part in the research probably won’t feel very different from taking part in the residential. However, if you choose to join in with the focus groups this will mean doing an extra session talking about the group each day. You might feel too tired sometimes, or feel that you don’t want to talk about stammering anymore. It’s ok to not join in if you feel that way. 

Taking part in the research will not affect the activities and support your receive on the residential in anyway. 

Taking part in the research will help Ben and the Talking Out team understand what it is like to take part in the residential, which might lead to improvements in the future. This may be helpful to other people who stammer. 

Focus groups can be fun and it might be helpful to think about what you have done on the residential and how this has helped you to feel differently about stammering. 

If you have any complaints about the project then you can talk to Ben or one of the team at the residential. If you feel your complaint has not been handled to your satisfaction you or your parents can contact the Leeds Beckett University using the details below.  

Yes. 

All the information that we collect about you during the course of the research will be kept strictly confidential. This means that you will not be able to be identified or identifiable in any reports or publications. Any data collected about you the assessments, or recordings of the focus groups will be stored online protected by passwords and other relevant security processes and technologies. 

What you say in focus groups will be kept private and won’t be shared with the residential staff. 

Data collected may be shared in an anonymised form to allow reuse by the research team and other third parties. No information about who you are will be shared with anybody. 

The only time we will share information is if you share something that raises concerns about your or somebody else’s safety. We will talk to you if this happens.